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Results for “Making Difficult Health Care Decisions”

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PubMedDate not supplied

[The role of a health information system as an aid in making regional public health decisions. Experience in Botswana (Southern Africa)].

Decision-making procedures within a health system vary according to the administrative and political organisation of each country. All health levels have, daily or irregularly, decisions to make. To provide reliable, objective and understandable information to decision makers is a difficult, expensive and sometimes misleading exercise. Basic data can be gathered through surveys or institutional routine. Through a concrete example within a Primary Health Care context, the possibilities and the advantages of the utilisation of routinely collected information, regionally processed, are described with the positive interactions within the whole health system. Validation, processing, relativization of the results and their use in supervision, epidemiological and performance surveillance are discussed, emphasizing the privileged aspect of Botswana.

Botswana↗

PubMed1997

Development of a primary health care information system in Ghana: lessons learned.

In Ghana, between January 1990 and September 1993, a series of steps were undertaken to review the existing vertical reporting procedures and to develop an integrated Health Management Information System (HMIS) for Primary Health Care (PHC). These steps included a situation analysis of the existing reporting systems; participatory design of tools for planning, data collection, feedback and reporting; field test and revision of the modified system; training of staff at all levels; development of tools for self-assessment and stimulation of routine feedback to lower levels and reporting of analysed indicators to higher levels. There were some notable achievements which included promotion of self-reliance, improved data relevance and accuracy, as well as strengthened supervision and support. However, it was difficult to identify the most appropriate institutional location for the HMIS; over-emphasis on process leads to reduced implementation; reporting was still given greater priority than analysis and use of data, and systems for collection and use were still cumbersome and time consuming. It is also difficult to prove that having better information really improves decision-making, or even coverage and quality of PHC service delivery. These issues, as well as lessons learned, are discussed in the paper.

Ghana↗

PubMedDate not supplied

A plan to improve end-of-life care for trauma victims and their families.

End-of-life care for trauma patients is unique in that clinicians rarely have the advantage of knowing victims prior to the event. In this setting, the unfamiliarity with patients' wishes and values, the critical nature of the injury, the overwhelming feelings of guilt that families often experience, the suddenness and acuity of the crisis, and the need to make life-and-death decisions, can result in end-of-life care scenarios that are challenging to manage and often difficult to experience. This article describes a plan to develop, implement, and test a best practice model of end-of-life care for trauma victims and their families.

Attitude to Health↗

PubMed2003

Cancer survivorship and agency model: implications for patient choice, decision making, and influence.

Relative to other types of health communication research (acute care physician patient communication, communication campaigns, compliance episodes, etc.), investigations of patient communication following the diagnosis of cancer are infrequent. Theoretically driven, empirical research is desperately needed in such postdiagnostic communication processes as survivorship, quality of life, palliative and hospice care, and loss, bereavement, and grief for those millions of people who have been diagnosed with the second leading cause of death in our nation. An organizational model of patient communication is needed that identifies and describes salient issues and processes involved when cancer patients attempt to negotiate the difficult courses of action following the diagnosis of cancer. The cancer survivorship and agency model (CSAM) proposes both general and specific strategies that serve as options for patients seeking to take greater control of the decision-making process related to their treatment and care of cancer. Although seemingly practical in its offering, CSAM is intended to serve as a heuristic springboard for theoretically based, applied communication research focusing exclusively on post diagnostic cancer processes.

Communication↗

PubMed2004

A health outcomes framework for assessing health status and quality of life: enhanced data for decision making.

BACKGROUND: Currently, information to improve health status and quality of life is derived from independently designed data systems that range from population-based health surveys to health records used in managing individual patient care. But there is no coherent strategy for using these data sources in concert across diverse applications. Thus, it is frequently difficult to compare or combine results across studies to provide population-level inferences based on findings from specific subpopulations. OBJECTIVE: The Health Outcomes Framework is an analytic structure to provide more comprehensive information about the health status and quality-of-life impact of disease and its treatment. This framework consists of three components: (1) a core set of health, lifestyle, and economic questionnaires that collect data from an individual's perspective; (2) applications that range from population to patient care levels; and (3) time. Although health is the outcome of interest, lifestyle behaviors and economic and political factors are important determinants of health, which also need to be studied using standardized procedures; thus, they are included in the core. This article focuses on the nature and application of a core health status and quality-of-life instrument. To be useful across a range of applications, such a core instrument needs to have three conceptual characteristics: (1) a theoretical model that regards health as a continuum of states; (2) domains that represent policy-relevant aspects of impairment, disability, and handicap; and (3) a set of societal preferences for these domains. In addition, the core needs to address three practical concerns: (1) brevity, (2) methods of administration that are suitable for respondents with diverse capabilities, and (3) documentation that is publicly available. These features are discussed using examples from currently available, multi-domain generic instruments, each of which has some, but not all, of the necessary features of the core instrument. CONCLUSION: The Health Outcomes Framework is intended to be a cooperative effort. It is proposed that the National Cancer Institute and the Centers for Disease Control and Prevention take leadership roles not only by adopting a core health status and quality-of-life instrument for use in current and future cancer data collection activities but also in encouraging industry and academic investigators to implement this core instrument in their cancer studies. Having a vertically integrated core instrument can lead to more representative data for informing decision making and ultimately for obtaining a more equitable distribution of health.

Decision Making↗

PubMed2004

Precaution, prevention, and public health ethics.

The precautionary principle brings a special challenge to the practice of evidence-based public health decision-making, suggesting changes in the interpretative methods of public health used to identify causes of disease. In this paper, precautionary changes to these methods are examined: including discounting contrary evidence, reducing the number of causal criteria, weakening the rules of evidence assigned to the criteria, and altering thresholds for statistical significance. All such changes reflect the precautionary goal of earlier primary preventive intervention, i.e. acting on insufficient evidence, the least amount, or minimum level, of evidence for causation. Evaluating the impact of these changes will be difficult without a careful study of how well the current methods of causal inference work, their theoretical foundations, and the ethical implications of their applications. That research program will be most productive if it is jointly developed by public health professionals trained in the ethics and philosophy and by bioethicists and philosophers trained in the theories, methods, and practice of public health.

Bioethical Issues↗

PubMed1997

Outcomes analysis in cardiac surgery.

Outcomes research is a quantitative assessment of the results of care. Outcomes analysis provides information that benefits the physician, the patient, the institution and the health care purchasers. It provides relevant and timely information for the assessment of the heart centre's performance. Outcomes data have proven to be useful to the attending physicians by providing a basis for clinical decision making. Patients may be appraised of the usual results and the risks of various treatment strategies and make informed decisions on their care. The purchasers of health care will be better informed regarding the costs and effectiveness of the care being delivered. O'Connor et al. have stated that methods of improving care are often discussed but are difficult to achieve due to processes of care being hidden from view. Outcomes research is a comprehensive performance evaluation strategy that may be used to discover the impact of these hidden aspects of care. This technology of the patient's experience is bringing cardiac surgery to a new level of excellence.

Cardiac Surgical Procedures↗

PubMedDate not supplied

The bias against new innovations in health care: value uncertainty and willingness to pay.

This paper offers a model for the bias found in willingness-to-pay valuations against new treatments. For example, this bias provides an explanation for patient preferences that make it difficult for formularies to take treatments off their lists, even when newer treatments would appear to be clearly preferable. The appeal of the model, which is based on imperfect information, is that it is consistent with rational preferences and rational behavior by patients, which are necessary for standard models and methods related to decision theory, cost-effectiveness, and efficiency.

Attitude↗

PubMed1995

Strategies for sampling black and ethnic minority populations.

BACKGROUND: The objective of the study was to describe the design and sampling methods used to carry out face-to-face interviews with a sample of the black and ethnic minority population of the area. This study was conducted in the city of Bristol, England (part of Bristol and District Health Authority). METHODS: The sample was based on up to 1000 interviews with black Caribbean/African, South Asian and Far-East Asian residents. The design of the study focuses on the problems of definition of the appropriate group to sample and the various sampling techniques that were necessary to procure the interviews. RESULTS: A total of 574 interviews were carried out by bilingual interviewers matched for sex and ethnicity of the respondent, thereby allowing analysis that would be beneficial to the Health Authority in its planning and decision-making. CONCLUSIONS: The use of name spotting and 'snowball' sampling proved the most productive. The Electoral Register was preferred to the Family Health Services Authority lists. Interviewers must be carefully selected and adequately trained to work in this difficult area. The questionnaire must be culturally and linguistically acceptable across all the ethnic groups.

Africa↗

PubMedDate not supplied

Caring for organ donors: the intensive care unit physicians' view.

This study examined the meanings that the intensive care unit (ICU) physicians attribute to their practice when caring for brain-dead organ donors. It is a phenomenological study, a qualitative method that searches for describing and understanding the experiences lived. Data were collected through recorded individual interviews made with 10 ICU physicians who work in a university hospital in the interior of São Paulo, Brazil. Three categories emerged from data: (1) providing care for brain-dead organ donors; (2) relating to donors and their families; and (3) the ethical concerns and self-awareness of the physicians. There is consensus as to many aspects: demand of technical qualification and excellence in practice; need of investing in technology of organ transplant; and donors seen as human beings and holders of human rights. Participants understand that family participation is decisive in the donation process, although interactions between the family members and the physicians are difficult because of the sensitive nature of the situation. The physicians often felt ill-prepared to openly discuss the topic of brain death and organ donation. Educational programs for physicians and family members may assist with this difficult process.

Adult↗

PubMed1998

Scientific evidence and research in primary care.

The key areas of scientific research in general internal medicine are (1) prevention; (2) the natural history of common illnesses; (3) improving the outcomes and efficiency of the health care system and (4) orphan diseases. Disease prevention is at the top of the list because of the enormous role preventable causes play in morbidity and mortality, above all tobacco. Research in this field is difficult because it touches such questions as individual behaviour and personal choice. Research in the natural history of common illnesses is critical to informed patient decision making. Recent studies show that procedures thought to be safe bear a high percentage of complications, when viewed from the generalist's point of view: high incidence of strokes after elective coronary bypass surgery; higher mortality rates among patients having had pulmonary catheterization; high incidence of incontinence and impotence after transurethral resection of the prostate. A third area for research in primary care is how to improve outcome and efficiency through improvements in the health care delivery system. This field touches the problem of unnecessary surgical interventions and inappropriate prescription of antibiotics. Orphan diseases in this context are conditions no speciality wants to study, such as dementia and low back pain. The most important obstacle for research in the field of general internal medicine is funding. It is much easier to be funded for research in high profile conditions, like heart disease, cancer and AIDS. A second barrier to research relates to the role of special interest groups in influencing not only funding but also policy. Important examples were the pressure on consensus conference decisions on the role of spinal fusion surgery for low back pain and on the question whether women between 40 and 50 should have annual mammography. For generalist research to be fruitful it is of outmost importance to have an adequate intellectual infrastructure, i.e. support by epidemiologists, biostatisticians, economists and research methodologists.

Evidence-Based Medicine↗

PubMed1995

The use of misclassification costs to learn rule-based decision support models for cost-effective hospital admission strategies.

Cost-effective health care is at the forefront of today's important health-related issues. A research team at the University of Pittsburgh has been interested in lowering the cost of medical care by attempting to define a subset of patients with community-acquire pneumonia for whom outpatient therapy is appropriate and safe. Sensitivity and specificity requirements for this domain make it difficult to use rule-based learning algorithms with standard measures of performance based on accuracy. This paper describes the use of misclassification costs to assist a rule-based machine-learning program in deriving a decision-support aid for choosing outpatient therapy for patients with community-acquired pneumonia.

Algorithms↗

PubMed1989

Ethics and professional practice in oncology.

All cancer treatment should be guided by patient values. These values can be ascertained either through dialogue about treatment modalities, interventions and their consequences, or through the expressed wishes of patients or their surrogates. A balance should be struck between always following patient wishes and traditional health care paternalism, whereby patients have had little or no say about their treatment. The best way to strike this balance is through advanced directives and intensive dialogue with the patient or surrogates about the patient's values throughout the course of treatment. In this way, the care of the cancer patient can become a truly fiduciary responsibility. Health care providers can salvage their traditional obligation to preserve life through a commitment to the preservation of the meaning of the patient's life. Conflicts about treatment are difficult to resolve, but a mechanism does exist for making ethical decisions. Institutions should support such mechanisms and guarantee the protection of the conscience of all individuals caring for patients, with the right to withdraw without prejudice to one's job, and without abandoning the patient.

Decision Making↗

PubMed2001

Costeffectiveness of diagnostic tests.

We review the principles underlying cost-effectiveness analysis of diagnostic tests and procedures. We use two clinical examples, diagnostic testing for early multiple sclerosis and for Helicobacter pylori to illustrate the methods of analysis and to show how the results can be useful for physicians or payers of health services in making decisions about provision and use of diagnostic services. Economic assessments of diagnostic tests are inherently more difficult than assessments of therapeutic interventions, mainly because of uncertainty about the relation between diagnosis and end results (outcomes) of care. Nonetheless, because of the increasing importance of diagnostic technology in medicine and healthcare, only with such assessments will the most value be gained from restricted medical resources.

Cost-Benefit Analysis↗

PubMed2004

Key articles and guidelines relative to treatment of patients with acute coronary syndromes.

Patients with cardiovascular disease who have acute coronary syndromes (ACS) are at risk of significant morbidity and mortality. Also, treatment of these patients in the early-phase setting has a significant financial impact on the health care system. With the existence of numerous pharmacologic agents, abundance of major clinical trials, and several nationally recognized clinical guidelines, compiling the needed reference material to make evidence-based decisions on the care of patients with ACS can be difficult for clinicians. To assist clinicians in this endeavor, we complied pertinent articles and guidelines that have shaped the current treatment of patients with ACS. Owing to the rapidly evolving body of evidence in the management of ACS, this compilation will require periodic updating.

Acute Disease↗

PubMedDate not supplied

Evaluation research in public health: barriers to the production and dissemination of outcomes data.

Health outcomes are becoming the currency of health care exchange, and a call for evidence dominates decision making at all levels. This discussion paper reviews methodological and sociopolitical barriers that impede the production and dissemination of outcome research in public health, with particular reference to nursing. Barriers to the production of high-quality research evidence include inaccessible graduate education and inadequate research funding. Also, randomized controlled trials (the ideal design for interventions studies) are uniquely difficult to implement for public health services. Practical and ethical difficulties arise in defining the intervention, implementing random allocation methods, selecting and measuring outcomes, and articulating adequate theoretical frameworks. When health care activity is defined as output, there is a tendency to exclude the ethical standing of preventive, supportive and communitarian functions. The production and interpretation of research results must remain part of a social, political and ethical debate, not a purely scientific one.

Canada↗

PubMed2004

Becoming a role model: the breastfeeding trajectory of Hong Kong women breastfeeding longer than 6 months.

While a substantial proportion of breastfeeding women stop early in the postpartum period, some women are able to breastfeed for longer periods. The aim of this research was to explore the experience of breastfeeding with a subsample of Hong Kong women who have breastfed for longer than 6 months. Participants (n=17) were recruited from a larger infant-feeding study (n=360) conducted in tertiary-care hospitals in Hong Kong. In-depth qualitative interviews were conducted and content analysis was used to analyse the data. Data analysis revealed four themes that encompassed the women's experiences: (1) making the decision, (2) maintaining family harmony, (3) overcoming barriers, and (4) sustaining lactation. Antenatally, participants anticipated that breastfeeding would be very 'difficult' and described how the practice did not fit with the image of a professional woman in Hong Kong. Despite family opposition, frequently from their mother-in-law, and lack of societal acceptance, difficulties were overcome by what the Chinese people call hung-sum or determination. This study highlights unique cultural and social findings affecting breastfeeding women in Hong Kong which may be useful to health-care providers working with Chinese women locally and internationally.

Adaptation, Psychological↗

PubMed2000

Challenges of decision making for families of children with single or multiple chronic conditions.

When a child is diagnosed with a chronic illness, families begin a constant cycle of decision making. Many of these decisions surround health care treatment. These families can be divided into two groups: those with children newly diagnosed with a chronic condition and those with children who have a preexisting illness. If a new diagnosis represents a family's entrance into the medical community, the decision-making process can be confusing and difficult. For the family of a child with a preexisting condition, making repeated decisions about treatments can be additionally stressful and anxiety provoking because of their medical history. How do families with a child with a preexisting medical condition differ in their decision making? What factors affect their decisions? The nurse practitioner has a critical role interacting with both types of families and guiding the decision-making process. Therefore, understanding the family and their previous experience is crucial to determine how nurse practitioners can best tailor interventions to promote effective decision making.

Adolescent↗