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Understanding treatment decision making: contexts, commonalities, complexities, and challenges.

BACKGROUND: The diagnosis of cancer sets off a cascade of complex decisions at a time when patients feel vulnerable and distressed. Although clinical decisions used to follow one standard, many guidelines now outline several options and include explicit recognition of the need to incorporate patients' preferences to determine the most appropriate treatment. PURPOSE: The purpose of this article is to provide a brief overview of empirical studies about cancer patients' treatment-related decision making, to highlight the areas of congruence and divergence in that empirical literature, and then to generate a framework that points to future interventions and research. METHODS: Through a group discussion with a range of experts in the field, we generated a framework for the critical treatment decisions and key issues within those decisions. Then, we reviewed the literature describing the experiences of cancer patients and evaluating interventions designed to improve the quality of treatment decisions. RESULTS: We identified four major differences that influence decision making across cancers and across individuals with the same diagnosis. We also identified four common themes across situations and people. There is considerable evidence that decision aids can improve the quality of decisions across a range of diseases, although the data for cancer treatment decision making are limited. Other interventions such as navigation-skill training are promising but have little evidence of benefit for cancer decisions. CONCLUSIONS: There are many opportunities for behavioral research to extend and contribute to the understanding and improvement of cancer treatment decision making. Some key areas in need of research include developing taxonomies of disease and patient characteristics and increasing understanding of the lived experiences of cancer survivors, of the influence of time and timing, of the relationship of information and preferences, and of participation in randomized clinical trials.

Comprehension↗

Why we do the things we do: applying clinical decision-making frameworks to triage practice.

This paper discusses major themes presented in the published literature concerning clinical decision making and links these to the practice of emergency department nurse triage. Themes discussed include: approaches to decision research in nursing and medicine; decision autonomy in nursing practice and clinical decision making under conditions of uncertainty. Some assumptions underpinning clinical decision-making frameworks are explored and the use of triage scales, algorithms and intuitive thought processes are discussed in terms of clinical practice. In addition, the strengths and limitations of each approach are outlined. It is argued that naturalistic research methods are necessary in order to describe the often uncertain and frequently chaotic environment in which triage decisions are made. This research must occur in order to evaluate and improve both the triage process and the outcomes of these decisions in practice.

Algorithms↗

Assisted and surrogate decision making for pregnant patients who have schizophrenia.

Because of a dearth of literature, we developed preventive ethics strategies for managing the pregnancies of patients with schizophrenia. Schizophrenia can chronically and variably impair a woman's decisions concerning the management of pregnancy, including the decision about whether to continue the pregnancy through to viability and term. The psychiatrist must balance autonomy-based and beneficence-based obligations to the pregnant woman with schizophrenia, and both the psychiatrist and pregnant woman have beneficence-based obligations to the fetus when the fetus is a patient. We discuss the assessment of the decision-making capacity of pregnant patients with schizophrenia and describe the strategies of assisted decision making that aim to diminish chronically and variably impaired autonomy. When patients are severely impaired in decision-making capacity, as, for example, in psychotic denial of pregnancy, the standard of surrogate decision making applies. This should be guided by the substituted judgment standard. When patients' values are not known or have not been consistently held over time, surrogate decision making should be guided by the best interests standard. These strategies should substantially enhance patients' autonomy in the psychiatrist-patient relationship and contribute to the quality of their psychiatric and obstetric care.

Abortion, Induced↗

Ethical decision making in clinical practice.

Contemporary nursing ethics education focuses on the use of an analytical model of ethical decision making for both its process and its content. Perhaps this is the case because it bears some resemblance to the nursing process, which is taught in a similar fashion. Thus, a deductivist method of ethical decision making fits within the same general schema of the hypotheticodeductive method of decision making that is taught for nursing diagnosis. Ethics requires that nurses respect persons, inform patients and secure their consent, not inflict harm, preserve the patient's quality of life, prevent harm and remove harmful conditions, do good for patients, and minimize risk to themselves. These are among the norms of obligation that guide ethical analysis and judgment in nursing practice and are the substance of the analytical model of ethical decision making. Nursing's ethics has established high ideals and strong demands for nurses. These are demands which nurses have met and ideals which have often been realized. Whatever the strength of our science, nursing is an inherently moral endeavor and is only as strong as its commitment to its ethical obligations and values. Between the grinding edges of the forces that affect it, nursing must establish its priorities among the aspects of its environment that it attempts to control. Ethics must be chief among those priorities.

Beneficence↗

Educational applications of a knowledge-based expert system for medical decision making in hepatology.

An expert system for medical decision making in hepatology has been developed with the aim of assisting medical education. The knowledge representation is based on different slots respectively concerned with structural and protypical description, and system control. Reasoning is performed at two levels considering in sequence syndromes and diseases. Explanations are available at any time during the reasoning process. Educational facilities are provided by using the help sections of the system, which include definitions and descriptions of finding in both health and disease, as well as summaries defining essential clinical and pathophysiological features of all diagnostic hypotheses. The system provides the following educational functions: support to medical decision making, differential diagnosis, knowledge-base consultation, system description and clinical simulation. A good correspondence was found between the conclusions and suggestions provided by the system and those of the attending physicians. The program, which was written in PROLOG and developed under MS-DOS Operating System, runs on IBM-compatible personal computers equipped with hard-disk and mouse.

Computer Systems↗

Measuring the involvement of patients in shared decision-making: a systematic review of instruments.

We wanted to determine whether research instruments exist which focus on measuring to what extent health professionals involve patients in treatment and management decisions. A systematic search and appraisal of the relevant literature was conducted by electronic searching techniques, snowball sampling and correspondence with field specialists. The instruments had to concentrate on assessing patient involvement in decision-making by observation techniques (either direct or using audio or videotaped data) and contain assessments of the core aspects of 'involvement', namely evidence of patients being involved (explicitly or implicitly) in decision-making processes, a portrayal of options and a decision-making or deferring stage. Eight instruments met the inclusion criteria. But we did not find any instruments that had been specifically designed to measure the concept of 'involving patients' in decisions. The results reveal that little attention has been given to a detailed assessment of the processes of patient involvement in decision-making. The existing instrumentation only includes these concepts as sub-units within broader assessments, and does not allow the construct of patient involvement to be measured accurately. Instruments developed to measure 'patient-centeredness' are unable to provide enough focus on 'involvement' because of their attempt to cover so many dimensions. The concept of patient involvement (shared decision-making; informed collaborative choice) is emerging in the literature and requires an accurate method of assessment.

Decision Making↗

Medical decision making using the analytic hierarchy process: choice of initial antimicrobial therapy for acute pyelonephritis.

The analytic hierarchy process (AHP) was used to determine which of seven recommended antibiotic regimens represented optimal initial therapy for a young woman hospitalized for treatment of acute pyelonephritis. The model included the following criteria: maximize cure, minimize adverse effects (broken down into very serious, serious, and limited), minimize antibiotic resistance, and minimize cost (divided into total cost and patient cost). The criteria were weighted according to judgments made by 61 practicing clinicians. Alternatives were compared relative to the criteria using published information on the expected frequencies of urinary pathogens and drug toxicity, local antibiotic sensitivities and antibiotic charges, and expert opinion regarding their propensities for inducing antimicrobial resistance. The analysis identified ampicillin combined with gentamicin as the optimal regimen. This study illustrates several features of the AHP that make it promising for use in medical decision making: its ability to incorporate multiple criteria into a formal decision model, its procedural simplicity, and its similarity to current patient management guidelines. Further studies to establish the role of the AHP in medical decision making are warranted.

Acute Disease↗

Decision-making capacity for research participation among individuals in the CATIE schizophrenia trial.

OBJECTIVE: Uncertainty regarding the degree to which persons with schizophrenia may lack decision-making capacity, and what the predictors of capacity may be led us to examine the relationship between psychopathology, neurocognitive functioning, and decision-making capacity in a large sample of persons with schizophrenia at entry into a clinical trial. METHOD: In the Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) schizophrenia trial, a clinical trial sponsored by the National Institute of Mental Health designed to compare the effectiveness of antipsychotic drugs, subjects were administered the MacArthur Competence Assessment Tool-Clinical Research (MacCAT-CR) and had to demonstrate adequate decision-making capacity before randomization. The MacCAT-CR, the Positive and Negative Syndrome Scale (PANSS), and an extensive neurocognitive battery were completed for 1447 study participants. RESULTS: The neurocognitive composite score and all 5 neurocognitive subscores (verbal memory, vigilance, processing speed, reasoning, and working memory) were positive correlates of the MacCAT-CR understanding, appreciation, and reasoning scales at baseline. Higher levels of negative symptoms, but not positive symptoms, were inversely correlated with these three MacCAT-CR scales. Linear regression models of all three MacCAT-CR scales identified working memory as a predictor; negative symptoms made a small contribution to the understanding and appreciation scores. CONCLUSIONS: Negative symptoms and aspects of neurocognitive functioning were correlated with decision-making capacity in this large sample of moderately ill subjects with schizophrenia. In multiple regression models predicting performance on the MacCAT-CR scales, working memory was the only consistent predictor of the components of decision-making capacity. Individuals with schizophrenia who have prominent cognitive dysfunction, especially memory impairment, may warrant particular attention when participating in research.

Adolescent↗

Intelligent purchasing in Trent: information for decision-making in the region's health authorities.

The realization of an evidence-based health service presents opportunities for libraries to make a direct contribution to the decision-making process in the delivery of health care. An example of such an opportunity is given through a description of the Trent Working Group on Acute Purchasing, a network of health authority purchasers that takes a research-based approach to making purchasing decisions. The Working Group is supported by a multidisciplinary research team, which includes an Information Officer. The role of the Information Officer in supporting the process of the Working Group is described below; namely in the setting of research priorities, in contributing to research projects and in disseminating the outputs of the Working Group. The benefits of being involved in such a project, both to the information service and to the Information Officer, are summarized.

Decision Making, Organizational↗

Impact of medical hospitalization on treatment decision-making capacity in the elderly.

A growing population of hospitalized elderly will need to make an increasing number of treatment decisions. No generally accepted criteria currently exist to assess the decision-making capacity of these elders. In this study, three hypothetical clinical vignettes were developed to assess treatment decision-making capacity in 25 presumably competent, medically ill, nondistressed, hospitalized elders and 25 healthy, age- and education-matched controls. The patients' understanding of the vignettes was evaluated and compared with their understanding of a standard consent form; with their performance on a mini-mental state examination; and with physician judgements about their decisional capacity. Vignette results indicate a significant difference between study and control groups in understanding of key treatment issues. Healthy controls demonstrated a better understanding of these issues. Twenty-eight percent of the patients had significant decisional impairments by vignette assessment but were not identified by mental status scores or physician judgments. Results suggest that presumably competent, medically ill elders may be at risk for developing decisional impairments during hospitalization for acute illness. Obtaining informed consent directly from many of these patients may not be feasible.

Aged↗

A politico-economic analysis of decision making in funding health service organisations.

From a normative perspective, conventional economic analysis is often used to establish a framework in which social objectives can be built into the decision-making process. The health economics literature, however, tends to overlook the positive analysis of decision making--often assuming particular social objectives that may or may not correspond with reality. This perhaps explains why exercises in health economics priority setting on occasions break down. This study is a positive analysis of group decision making. It examines the process of deliberating upon proposed changes to funding arrangements across Divisions of General Practice in Queensland, Australia. Existing levels of funding had, for a number of years, largely been determined by an allocation formula. The motivation for this study was a perceived inequity created by the long-term under-funding of smaller (resource poor or 'marginal') Divisions. The challenge in this project was that any change in funding arrangements required the support of all the Divisions but also would potentially create 'winners' and 'losers'. Decision making within such an institutional context was rendered a zero sum game. This paper documents a consultative process whereby the relevant stakeholders, with clear interests in any decision, were asked to participate in deliberations as to how such a problem should be tackled. The objective was, in the face of adverse incentives, to derive recommendations for addressing existing shortfalls experienced by some of these Divisions. The process involved encouraging relevant players to take into consideration the global allocation issues and to move beyond their localised interests. The results indicate that such a process can be effective in not only generating the necessary goodwill to enable such group decision making, but also in establishing a more realistic set of policy recommendations.

Consensus↗

End-of-life decision making for nursing home residents with dementia.

PURPOSE: To describe families' decision-making processes, both cognitive and affective, regarding end-of-life treatments for nursing home residents with moderately severe to very severe dementia. DESIGN: Naturalistic inquiry provided the framework for this descriptive, qualitative study. METHODS: Four focus groups were conducted in selected nursing homes, in the central part of the United States for a qualitative study. Twenty-eight family members of residents with moderately severe to severe dementia shared their decision-making experiences. Open-ended questions were asked in each focus group. Data were analyzed using content analysis. FINDINGS: Five themes were identified that describe the context of decision making: emotional effect, insult-to-life story, two faces of death, values and goals regarding end-of-life treatments, and the unrecognized trajectory of dying. Family members made decisions in an emotional climate of overwhelming burden and guilt, because their loved one's life had been robbed of personhood, the changes associated with decline from a dementia-related illness were unrecognized as part of a trajectory of dying, death was both a tragedy and a blessing. CONCLUSIONS: Family members had poignant, unresolved emotional needs stemming from their loved one's illness and nursing home placement. Participants were unprepared to make end-of-life treatment decisions and lacked the informational and emotional support of a consistent provider to help with decisions. Family members need assistance in processing difficult and painful emotions, understanding the trajectory of disease, what decisions might impede a natural death, and comfort or palliative care options.

Aged↗

Artificial Intelligence Technologies in Nursing Clinical Decision-Making: An Umbrella Review.

AIM: To describe contemporary peer-reviewed literature on artificial intelligence in nurses' clinical decision-making. METHODS: An umbrella review of literature reviews. DATA SOURCES: Four major databases were searched for reviews published between 2019 and 2024. RESULTS: Sixteen literature reviews reported on 965 nursing artificial intelligence primary studies. The studies focused on technology development and emerging performance evaluations, whilst real-world testing or implementation in nursing clinical settings was rare. Rigorous comparative analyses were lacking. While artificial intelligence demonstrates promise in decision-making, challenges such as a lack of controlled studies, algorithmic bias, limited reproducibility and insufficient clinical trials hinder its practical impact. Ethical concerns, transparency and patient data privacy issues pose barriers to AI integration in nursing practice. Ethical and legal guidelines for patient privacy are needed and should be taught along with AI literacy training for nurses. CONCLUSIONS: Artificial intelligence has the potential to enhance clinical nursing decision-making, although evidence is limited by too few examples of nurse participation during development. Underutilisation in administrative nursing functions hinders implementation. Nurses should assume a central role in the design and development of AI applications to ensure that these technologies address the realities of nursing practice. With such improvements, artificial intelligence can transform nursing practice, improve nurses' clinical decision-making and ultimately enhance consumer healthcare outcomes. PATIENT OR PUBLIC INVOLVEMENT: No Patient or Public Involvement. REPORTING METHOD: While there is no reporting checklist for umbrella reviews, the PRISMA guide for systematic reviews was followed.

Artificial Intelligence↗

Research implications of science-informed, value-based decision making.

In 'Hard' science, scientists correctly operate as the 'guardians of certainty', using hypothesis testing formulations and value judgements about error rates and time discounting that make classical inferential methods appropriate. But these methods can neither generate most of the inputs needed by decision makers in their time frame, nor generate them in a form that allows them to be integrated into the decision in an analytically coherent and transparent way. The need for transparent accountability in public decision making under uncertainty and value conflict means the analytical coherence provided by the stochastic Bayesian decision analytic approach, drawing on the outputs of Bayesian science, is needed. If scientific researchers are to play the role they should be playing in informing value-based decision making, they need to see themselves also as 'guardians of uncertainty', ensuring that the best possible current posterior distributions on relevant parameters are made available for decision making, irrespective of the state of the certainty-seeking research. The paper distinguishes the actors employing different technologies in terms of the focus of the technology (knowledge, values, choice); the 'home base' mode of their activity on the cognitive continuum of varying analysis-to-intuition ratios; and the underlying value judgements of the activity (especially error loss functions and time discount rates). Those who propose any principle of decision making other than the banal 'Best Principle', including the 'Precautionary Principle', are properly interpreted as advocates seeking to have their own value judgements and preferences regarding mode location apply. The task for accountable decision makers, and their supporting technologists, is to determine the best course of action under the universal conditions of uncertainty and value difference/conflict.

Bayes Theorem↗

Health care system reform and the scope of independence in decision making by environmental/family nurses. I. Conditions for bearing responsibility for work results.

The reform of health care system, as well as the Act concerning health care units and public health insurance, provided an incentive for gaining independence by health services providers. This also pertains to environmental/family nurses who should decide on the scope of care provided and the results of nursing. Hence, a research problem was posed concerning the effect of health care system reform on the scope of independence in decision making by environmental/family nurses. This problem covered detailed questions with respect to changes in work schedule tasks, competence and responsibilities, as well as the provision of a resource base at workplaces. The study covered a total number of 110 people - 50 employed in non-public health care units and 60 in public institutions. The method of diagnostic survey and two types of statistical tests--Student's t test and 'u' test--were applied in the study. The results of the survey showed that nurses employed in new organizational forms of PHC had better conditions with respect to both their work schedules and provision of equipment at workplaces. This especially concerned a higher standard of resource base and equipment available for the staff employed on contract basis. It was confirmed that the number of nurses employed on independent contracts was small; hence a small area of independence in making decisions by environmental/family nurses.

Decision Making↗

Professional uncertainty and physician medical decision-making in a multiple treatment framework.

This paper develops a new microanalytic approach to physician medical decision-making treatment setting. Physician medical decision-making is modelled as a two-stage sequential process. In Stage 1, the patient's illness is diagnosed and the health outcomes for all illness-related restoration options are identified. In Stage 2, an "optimal" restoration option is selected. This model provides new insights into physician medical decision-making and the complexity of proving physician-induced demand in a medical care market where professional uncertainty and consumer heterogeneity exist.

Clinical Competence↗

Considerations of healthcare professionals in medical decision-making about treatment for clinical end-stage cancer patients.

In order to determine which considerations healthcare professionals use in decision-making about treatment for inpatients with end-stage cancer, we observed 110 discussions at multidisciplinary meetings at two oncology departments. The discussions concerned 74 patients. Thirty-three of the 110 discussions concerned potentially life-prolonging or life-shortening treatments. The most important decision-making considerations were chance of improvement, patient's treatment wishes, amount of suffering, and the chance of therapy being successful. Discussions resulted in 6 decisions that might shorten life, 10 decisions that might prolong life, and 23 postponements of decisions because of lack of information. These observations confirm that medical interventions with a possible life-prolonging or life-shortening effect are a frequently discussed issue in medical decision-making for end-stage cancer patients in The Netherlands. Before making a decision, healthcare professionals gather extensive information about what gain is to be expected from an intervention. When healthcare professionals establish that a decision would be medically appropriate, the patient's wish will often be an important consideration.

Adult↗

Decision-making strategies for patients with localized prostate cancer.

Patients diagnosed with early-stage prostate cancer not only have to cope with the impact of the cancer diagnosis, but also need to interpret complicated medical information to make an informed treatment decision. We report initial results from an ongoing longitudinal investigation examining treatment decision making among men diagnosed with early stage prostate cancer. Men (N = 654) were recruited into the assessment study after an initial treatment consultation with a urologic surgeon or radiation oncologist. Patients were, on average, 66 years old, married (85%), had at least a high school education (45%), were retired (58%), and were Caucasian (91%) or African American (7%). Guided by a cognitive-affective theoretical framework, we assessed treatment and disease-relevant beliefs and affects in addition to clinical variables. The majority of patients decided on external beam radiation therapy (52%), followed by brachytherapy (25%), prostatectomy (17%), and watchful waiting (6%). Patients who decided on prostatectomy were significantly younger (mean age, 58 yr) than patients who received radiation therapy (mean age, 67 yr) and brachytherapy (mean age, 66 yr). When asked for the most important reason influencing their treatment decision, patients indicated physician recommendation (51%), advice from friends and family (19%), information obtained from books and journals (18%), or the Internet (7%). Among cognitive variables, patients who decided on surgery perceived prostate cancer as being significantly more serious (P <.001), and had greater difficulties in making a treatment decision (P <.005) compared with patients receiving radiation therapy or brachytherapy. Surgical patients were also more distressed about their treatment decision (P <.001) and concerned that the cancer might spread (P <.005). To date, patients followed-up after treatment have not indicated significant regrets about their therapeutic choice. These data suggest that unique treatment-related beliefs and affects need to be taken into account during the treatment counseling process. Implications for the development of decision aids are discussed.

Aged↗