Studying patients' preferences in health care decision making. Health Services Research Group.
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Decision Making↗
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The research basis of health care decision making.
Regarding health care services, the decision-making process occurs at three primary levels: macro (national), mid-range (hospital) and micro (individual practitioner). The research basis for this process at each of these levels is briefly discussed, with an emphasis concerning which type of data is and/or should be utilized. The paradigm assumptions behind data generation are also explored with reference to methodologies which seek to combine different types of data. The nursing profession, within the changing structure of the NHS, needs to take account of data generation if it is to play an active research role, and therefore be able to influence the health care decision-making process.
Data Collection↗
Health care decision-making capacity: a legal perspective for long-term care providers.
While federal law establishes guidelines that designated facilities must follow in providing information about a patient's rights regarding self-determination in the health care decision-making process, state law determines the decision-making process and the legal requirements pertaining thereto. A person's capacity to make health care decisions or to have the authority and capacity to delegate the right to make such decisions is a legal conclusion based on statutory and common law principles. This article discusses the legal perspective of capacity in health care decision making and the legal framework of the question of whether or not a person has the capacity to make health care decisions. Western civilization's concepts of personal autonomy and self-determination are at the core of health care decision making, but health care providers must be aware that other cultures do not always share that value system. Sensitivity to multicultural diversity in this context is imperative to maintain individual self-esteem and respect, both for the patient and the patient's family.
Advance Directives↗
Fifteen things you should know about new Maryland laws when making health care decisions.
Recent dramatic changes to Maryland law regarding health care decision making for incapacitated patients will have significant impact on the role of physicians in making these decisions. On October 1, 1993, the newly passed Maryland Health Care Decision Act took effect, and revisions to state guardianship laws were implemented. The laws, which Governor Schaefer approved on May 11, 1993, modify existing statutory language pertaining to the four legal tools available for making health care decisions for a person when he or she becomes incapacitated: (1) living wills, (2) substituted consents for medical procedures, (3) health care power of attorney appointments, and (4) guardianship proceedings. This article summarizes 15 important points in these new or revised Maryland laws on health care decision making.
Advance Directives↗
Lay participation in health care decision making: a conceptual framework.
Lay participation in health care decision making has attracted increasing interest in Canada, with numerous provincial government reports advocating this initiative. Interest stems from a number of factors. Among them is a growing recognition that patient preferences ought to be incorporated into decision making that involves individual treatment choices. Another factor is the desire to increase public accountability for decisions on the allocation of health care resources, in order to make providers more accountable to the communities they serve. There is, however, still considerable confusion over what lay participation really means. In addition, little consideration has been given to whether and how lay participation can lead to better decision making and the criteria by which it should be judged. This article presents a framework based on decision-making domains, role perspectives, and levels of participation and is intended as an initial step toward providing greater conceptual clarity regarding the key dimensions and goals of lay participation in health care decision making.
Canada↗
Cultural context, health and health care decision making. 1994.
Decisions about health promotion and illness prevention occur within a cultural context that is influenced by the contemporary context of community and family in addition to the ethnohistorical and language contexts, worldview and sociocultural factors of the particular culture and the available folk and professional health care resources. Using information about the health and care beliefs and values and health care decision making process in negotiating culturally congruent nursing and health care interventions is imperative, especially in a world with limited health care resources and an increasing demand for recognition of cultural diversity. This article uses data on health and health care decision-making from an ethnonursing study of the Old Order Amish to demonstrate the role of cultural context in health care practices and decision making. Leininger's cultural care theory and Hall's conceptualization of high context culture were used to investigate these phenomena. High context features of the Old Order Amish culture are used to explain how Amish are actively involved in decisions and actions taken to promote health and prevent and treat illness using a broad array of folk, alternative and professional services simultaneously. As nurses learn to involve clients in decisions and actions using the guiding principles of cultural care preservation, accommodation and repatterning they will provide culturally congruent care for Amish and other culture-specific groups.
Attitude to Health↗
Improving the quality of decision-making in health care management: a project report from the Nevada/Bohemia health management education partnership.
Health care is a data-sensitive and data-rich industry. Designers of health administration curricula recognize that future health care providers and managers must be trained to use available analytical and database information technology (IT) to transform these data into information helpful to the decision-maker. However, as the data available to administrators and clinicians proliferates, additional skills are needed to select data that is pertinent and useful. This paper presents the results of the collaboration of partners from Bohemia and University of Nevada and focuses on three areas: threats to the effective use of data to support health care decision-making;. health care decision support research and training strategies; future cross-disciplinary collaboration in health care decision support. Advanced IT methods have the potential to assist clinical and managerial decision-making. If further discussion is stimulated about the introduction of advanced IT methods into the health care management curriculum and research agenda, this paper will achieve its goal.
Curriculum↗
The ethical basis of the precautionary principle in health care decision making.
This article explores the relation between the precautionary and health care decision making. Decision making in medical practice as well as health policy is characterized by uncertainty. On the level of clinical practice for example, one never knows in advance whether one has made the right diagnosis or has opted for the right treatment. Though medical decisions have a risk on serious harms and burdens, the precautionary principle is not applicable to health care. This principle holds that one should not act when there is no scientific proof that no harms will result from a medical act or a policy decision. However, in clinical practice there is a duty to act. Physicians have an obligation to do good to their patients and have to weigh the benefits against possible harms and burdens. The basis virtue of medical decision making is not avoidance of risks, as stated in the precautionary principle, but the prudent assessment of benefits, burdens, and harms, in relation to other ethical principles like respect for autonomy and justice. The precautionary principle does play a role in health care, but it should never rule medical decision making as an absolute principle. This is not only true for clinical decision making, but also for the area of health policy. Physicians and other health care decision makers need to have knowledge about the possible effects of treatments or the precision of diagnostic procedures in order to reduce harm and promote well-being. Evidence-based medicine may contribute to the wisdom of health care decision makers, but this evidence-based wisdom should always be applied under the guidance of prudence, which is the central virtue of health care decision making.
Bioethics↗
Capacity to make health care decisions: its importance in clinical practice.
BACKGROUND: Assessment of capacity plays a pivotal role in determining when decisions need to be made on behalf of an individual. It therefore has major clinical management implications for health care professionals and civil liberties implications for the person concerned. In many countries, there is a presumption that adults have the capacity to make health care decisions. However, in persons with a mental disability, capacity may be temporarily or permanently impaired. METHODS: A selective review is presented which considers: (i) the broad approaches taken to determining capacity; (ii) the abilities commonly assessed in determining capacity; and (iii) the principles underlying health care decision-making for adults who are without capacity. RESULTS: Capacity is a functional concept, determined by the person's ability to understand, retain, and weigh up information relevant to the decision in order to arrive at a choice, and then to communicate that choice. We have reviewed the studies that examined decision-making abilities in people with dementia, chronic mental illness or intellectual disabilities. Approaches to decision-making in adults who lack capacity include: anticipatory decisions made through advance health care statements or decisions by proxy based on 'best interests' or 'substituted judgement'. CONCLUSIONS: The understanding of clinical and legal aspects of capacity is still developing. This paper examines current concepts of capacity and decision-making on behalf of those without capacity. We propose a framework, in line with current ethical and legal guidelines, as an aid to clinicians when they are seeking consent for a health care intervention.
Adult↗
Community participation in health care decision making: is it feasible?
Health care reform strategies proposed by provincial governments include decentralized funding and increased public participation in decision making. These proposals do not give details as to the public participation process, and a number of questions have been raised by the experience of some communities. Which citizens should form the decision-making group? What information do they need? What kinds of decisions should they make? What level of participation should they have? The results of a survey by Abelson and associates (see pages 403 to 412 of this issue) challenge the assumption that "communities" are willing to participate in health-care and social-service decision making. Willingness varied according to the composition of the groups polled, and participants' support for traditional decision makers increased after the complexities of the decision-making process were discussed. However, whereas their study measured willingness to participate at one point in time only, experience gained from Ontario's Better Beginnings, Better Futures project indicates that, given sufficient time, "ordinary" citizens are willing and can acquire the skills needed to decide how resources should be allocated for social services.
Canada↗
Understanding the role of contextual influences on local health-care decision making: case study results from Ontario, Canada.
Approaches to involving the public in local health care decision making processes (and analyses of these approaches) have tended to treat participation and publics uniformly in search of the ideal method of involving the public or providing the same opportunities for public participation regardless of differing socio-economic, cultural, insitutional or political contexts within which decisions are made. Less attention has been given to the potential for various contextual factors to influence both the methods employed and the outcomes of such community decision-making processes. The paper explores the role that context (three sets of contextual influences more specifically) plays in shaping community decision-making processes. Results from case studies of public participation in local health-care decision making in four geographic communities in Ontario are presented. During the study period, two of these communities were actively involved in health services restructuring processes while one had recently completed its process and the fourth had not yet engaged in one. Several themes emerge from the case studies regarding the identification and role of contextual influences in differentially shaping participation in local health care decision-making. These include the propensity for communities with different social and structural attributes to engage in different "styles" of participation; the importance attached to "community values" in shaping both the qualitative and quantitative aspects of participation: the role of health councils, local government and inter-organizational collaboration as participation "enablers"; and the politicization of participation that occurs around contentious issues such as hospital closures.
Community Health Planning↗
'The public is too subjective': public involvement at different levels of health-care decision making.
There are a number of impulses towards public participation in health care decision making including instrumentalist, communitarian, educative and expressive impulses and the desire for increased accountability. There has, however, been little research looking systematically at the public's preferences for being involved in particular types of rationing decisions, nor indeed, has there been a critical examination of the degree of involvement desired by the public. The research reported here uses findings from focus groups and in-depth interviews to explore these questions. Eight focus groups were conducted with a total of 57 informants, four amongst randomly selected members of the public and four with informants from health and non-health related organisations. Nineteen interviews were conducted to allow the elaboration of focus group comments, to probe views more deeply and to pursue emerging themes. The findings show variations in the willingness of members of the public to be involved in health care decisions and consistency across the different forms of the public as represented by the focus groups with randomly selected citizens and pre-existing organisations. There was a strong desire in all the groups for the public to be involved both at the system and programme levels, with much less willingness to be involved at the individual level. At the system and programme levels informants generally favoured consultation, without responsibility for decisions, but with the guarantee that their contribution would be heard and that decisions taken following consultation would be explained. At the patient level informants felt that the public should participate only by setting criteria for deciding between potential beneficiaries of treatment. The public has much to contribute, particularly at the system and programme levels, to supplement the inputs of health care professionals.
Attitude to Health↗
A revolution in understanding: how ethics has transformed health care decision making.
This paper traces the evolution of a new model of health care decision making, from its beginnings in the collapse of "parentalism," through the articulation of the concept of patient autonomy, and perhaps most visibly to the emergence and institutionalization of the idea of patients' rights. Health care professionals no longer uncritically and inappropriately claim access to knowledge of what is right and good for their patients. In the new model, knowledge of the right course of treatment is discovered through sustained dialogue; ultimate authority is exercised by the patient; and responsibility is shared between patient, family, and multiple health care providers. One test of this new model is the extent to which inevitable ethical conflict is acknowledged.
Decision Making↗
Bonding and cracking: the role of informal, interpersonal networks in health care decision making.
This study examined the role and impact of informal, interpersonal networks in health care decision making. Questioning the traditional approach to studying health communication as it is situated within institutions (e.g., Burgoon, 1992; Nussbaum, 1989; Pettegrew & Logan, 1987), this ethnographic study ventured into the lived experiences of women in a mothers' and toddlers' playgroup as they discussed their own, their family members', and their friends' health experiences. Their conversations revolved around such health-related issues as pregnancy and delivery, physicians and hospitals, breastfeeding, illnesses and accidents, and diet and nutrition. The conversations were found to serve not necessarily opposing but distinctive functions including a rather practical purpose of "cracking the code" of institutional practices, as well as a "bonding" function evidenced through stories or narratives. The conversations are not only exchanges of information but also narratives through which shared experiences are created and maintained. In addition to these narrative functions, examination of these conversations reveals how diagnoses and remedies from the institutions are discussed and decisions are made. The conclusion offers ideas for how agencies and institutions can utilize the findings of this particular research venture.
Journal Article↗
Direct-to-consumer advertising and its utility in health care decision making: a consumer perspective.
The growth in direct-to-consumer advertising(DTCA)over the past two decades has facilitated the communication of prescription drug information directly to consumers. Data from a 1999 national survey are employed to determine the factors influencing consumers' opinions of the utility of DTC ads for health care decision making. We also analyze whether consumers use DTC ad information in health care decision making and who are the key drivers of such information utilization. The study results suggest that consumers have positive opinions of DTCA utility, varying across demographics and perceptions of certain advertisement features. Specifically, consumers value information about both risks and benefits, but the perception of risk information is more important in shaping opinions of ad utility than the perception of benefit information. Consumers still perceive, however that the quality of benefit information in DTC ads is better than that of risk information. Opinions about ad utility significantly influence whether information from DTC ads is used in health care decision making.
Adult↗
The role of consumers in health care decision making.
This paper focuses on the results of a survey of chief executive officers and consumer board members of Ontario hospitals and community health centres regarding the role of consumers in health care decision making. The opinions of both the chief executive officer and consumer board member respondents were elicited regarding the value of consumer input in decision making for the organizations studied. Results indicate that consumer board members feel that their input into organizational decision making is valued, chief executive officers value the input of consumers, and consumer involvement in decision making is increasing. More women are now involved on boards of the organizations studied, but visible minority representation remains low on hospital boards. Consumer board members feel that their decision making is influenced by providers on the board.
Attitude of Health Personnel↗
Taking care of self: Health care decision making of American Indian women.
In this article, I report a component of a qualitative grounded theory study on health care decision making of American Indian women (AIW) residing in the Northeastern United States. Analysis was based upon data collected from 20 women who self-identified as American Indian. Taking care of self was a primary factor influencing health care decisions among this sample of AIW. As women moved between their Native, traditional health practices and conventional Western health practices, efforts toward taking care of self were especially salient. The properties of taking care of self include knowing family history; balancing mind, body, and spirit; understanding the body; and integrating natural practices. I also address some implications of the study findings for practitioners working with Native women.
Adult↗
Asian and Pacific Islander cultural values: considerations for health care decision making.
As the United States becomes more ethnically diverse, health care practitioners must learn about the perspectives and values of a variety of cultural groups. Of interest is how these cultural values intersect with those of the dominant culture, especially in the health care arena. This article explores the values that influence decision making among Asian and Pacific Islander cultures, with specific illustrations from six of these cultures. The literature, along with our observations as health professionals and researchers working in Hawaii, suggest potential areas of conflict between the more collectivist values of Asian and Pacific Islander cultures and the more individualist orientation of the U.S. health care system. Implications for practice and research are presented.
Adult Children↗