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PubMed2006

The significance for decision-making of information that is not exchanged by patients and health professionals during consultations.

Information exchange between patients and health professionals is fundamental to achieving patient participation in decision-making and shared decision-making is said to require the exchange of "all information relevant to decision-making". This paper reports on a qualitative investigation of instances in which information that was potentially relevant to decision-making was not exchanged in consultations. Consultations from 5 diverse clinical areas in the UK were video-recorded and the health professionals and patients involved were interviewed separately before and after their consultations. This analysis is based on cases involving 20 patients. It draws on data from their 26-recorded consultations and from the 137 associated interviews. Several strategies were used to identify instances in which patients and/or health professionals did not disclose information that was potentially relevant to decision-making. Analysis focussed on the types of information not disclosed, the reasons that health professionals and patients gave for non-disclosure, and the apparent or potential significance of the non-disclosure. We identified 34 instances of non-disclosure of information relating to the patient's problem and 52 instances of non-disclosure of information relating to treatment or management options. The types of information not disclosed were diverse and the reasons given for non-disclosure varied. Some, but not all, instances of non-disclosure had negative implications for the quality of decision-making and/or the patient's healthcare experience. Our findings have implications for future attempts to examine information exchange in consultations-whether for research or for professional assessment purposes. In particular, they highlight the importance of appraising instances of non-disclosure of information in context and of recognising the limitations of approaches that rely on single consultations and/or single perspectives for assessments of information exchange.

Adult↗
PubMed2003

The significance of quality of life in health care.

This paper compares a traditional biomedical model with an outcomes model for evaluating health care. The traditional model emphasizes diagnosis and disease-specific outcomes. In contrast, the outcomes model emphasizes life expectancy and health-related quality of life. Although the models are similar, they lead to different conclusions with regard to some interventions. For some conditions, diagnosis and treatment may reduce the impact of a particular disease without extending life expectancy or improving quality of life. Older individuals with multiple co-morbidities may not benefit from treatments for a particular disease if competing health problems threaten life or reduce quality of life. In preventive medicine, diagnosis of disease is made more difficult because of ambiguity, uncertainty, lead-time bias, and length bias. In some circumstances, successful diagnosis and treatment may actually reduce life expectancy or overall life quality. Example applications of the outcomes model from clinical policy analysis, individual decision making and shared decision-making are offered. The outcomes model has received little attention in dental health care but may have parallels to applications in other areas of medicine.

Decision Making↗
PubMed2001

Psychological aspects of genetic counseling. XIV. Nondirectiveness and counseling skills.

The difficulties some professionals have in achieving nondirective goals is largely due to the inadequate and ineffective application of basic counseling skills. The "new genetics," with its emphasis on decision-making in association with genetic testing, is among the most demanding forms of personal counseling, the effectiveness of which depends largely on the professional's human experience and counseling abilities. Examples are given showing inadequacies in professional responses to clients in genetic counseling which, in turn, defeat the achievement of a nondirectiveness that is helpful to clients, supports their self-directedness, and leaves them more psychologically prepared for quality decision making. Other models of counseling (e.g., shared decision making) will not fare any better than the nondirective one unless counseling skills of professionals in genetic services are upgraded in a significant way. Professional organizations need to give greater attention to the training and postgraduate supervision of all personnel involved in genetics services.

Decision Making↗
PubMed2005

Effects of false-positive prostate cancer screening results on subsequent prostate cancer screening behavior.

OBJECTIVES: Little is known about screening behavior following a false-positive prostate cancer screening result, which we have defined as a screening result with "abnormal/suspicious" labeling that did not result in a prostate cancer diagnosis within 14 months. The purpose of this analysis was to examine whether age, race, education, or previous false-positive prostate cancer screening results via prostate-specific antigen or digital rectal exam predict decision to obtain subsequent prostate cancer screening. METHODS: Data were drawn from the Prostate, Lung, Colorectal, and Ovarian Cancer Screening Trial. The study sample consisted of 2,290 older men (mean age, 62.8 years; range, 55-75 years) who had false-positive (n = 318) or negative (n = 1,972) prostate-specific antigen or digital rectal exam baseline prostate cancer screening results. Multivariable logistic regression was used to assess the effect of false-positive results on subsequent prostate cancer screening behavior, adjusting for all covariates. RESULTS: The multivariable model showed that being African American (P = 0.016), and having a high school education or less (P = 0.007), having a previous false-positive prostate cancer screening result (P < 0.001), were predictive of not returning for prostate cancer screening in the following screening trial year. CONCLUSION: The study results highlight the importance of shared decision making between patients and their providers regarding the risks and benefits of prostate cancer screening, and follow-up options for abnormal prostate cancer screening results. Shared decision making may be especially important for African American men, whom prostate cancer disproportionately affects.

Black or African American↗
PubMed2001

Management of dementia in primary health care: the experiences of collaboration between the GP and the district nurse.

OBJECTIVE: The objective of this study was to explore the context and experiences of collaboration between the GP and the district nurse (DN) in diagnosing dementia, in order to identify possible procedures to improve care. METHODS: Two group interviews were conducted with four DNs and five GPs, respectively, working in the municipality of Copenhagen. RESULTS: The group interviews revealed that the suboptimized collaboration could be due to different inter-professional diagnostic strategies and a lack of understanding of the importance of early, shared, decision making. This could create conflicts between the groups. CONCLUSIONS: This study indicates a possibility for improved collaboration between the two professional groups in diagnosing dementia. Possible approaches for improved care should focus on an inter-professional understanding of the importance of early, shared, decision making, emphasizing early identification and care of diagnosed demented patients. Establishing a shared collaboration model including out-patient memory clinics, GPs and DNs could be a first step. This model should also take into account an evaluation of possible consequences for the diagnosed demented patients in terms of treatment and care and consider the indication for referrals to a comprehensive diagnostic evaluation. We are at present planning a study to address these aspects.

Adult↗
PubMed2004

Women's views of optimal risk communication and decision making in general practice consultations about the menopause and hormone replacement therapy.

Primary care consultations about the menopause and hormone replacement therapy (HRT) involve decision making in the face of clinical uncertainty. This qualitative study used focus groups and semi-structured interviews with primary care patients to explore patients' perspectives of optimal risk communication and decision making, and their views on how to improve its effectiveness. The study was set in two general practices in Cambridge, and the participants were 40 women aged between 50 and 55 years, known to be Current-Users (CU), Ex-Users (EU), or Never-Users (NU) of HRT. The majority of participants favoured communication of risks and benefits to facilitate an informed and personalised choice resulting in informed shared decision making, while some wanted a more directive approach. Women felt that risk communication would be optimised by the provision of unbiased, truthful and summarised information, and also by the personalisation of both this risk information and subsequent management of the menopause and treatment with HRT. Barriers to optimal risk communication and decision making included lack of time, GP attitudes and poor communication in the primary care consultation. In summary, consultations concerning the menopause and HRT involve complex decision making in the face of uncertainty, and most patients favour evidence-based, individualised risk information and shared decision making leading to informed choices. Some patients wish for a more directive approach, and practitioners need to develop skills to evaluate each patient's needs at each consultation.

Attitude of Health Personnel↗
PubMed2004

Education and role modelling for clinical decisions with female cancer patients.

BACKGROUND: Patients vary widely in their preferences and capacity for participating in treatment decision-making. There are few interventions targeting patient understanding of how doctors make decisions and shared decision-making. This randomized trial investigates the effects of providing cancer patients with a package designed to facilitate shared decision-making prior to seeing their oncologist. PATIENTS AND METHODS: Sixty-five female cancer patients were randomized to receive either the package (booklet and 15-min video) or a booklet on living with cancer, before their initial consultation. Participants completed questionnaires prior to the intervention, immediately after the oncology consultation, and 2 weeks and 6 months later. The first consultation with the oncologist was audio-taped and transcribed. RESULTS: Patients receiving the package were more likely than controls to declare their information and treatment preferences in the consultation, and their perspectives on the costs, side-effects and benefits of treatment. Doctors introduced considerably more new themes in the consultations with intervention subjects than they did with controls; no other differences in doctor behaviour were noted. CONCLUSIONS: This short intervention successfully shifted patient and doctor behaviour closer to the shared decision-making model, although it did not alter patients' preferences for information or involvement.

Adult↗
PubMed2002

Patient autonomy and the challenge of clinical uncertainty.

Bioethicists have articulated an ideal of shared decision making between physician and patient, but in doing so the role of clinical uncertainty has not been adequately confronted. In the face of uncertainty about the patient's prognosis and the best course of treatment, many physicians revert to a model of nondisclosure and nondiscussion, thus closing off opportunities for shared decision making. Empirical studies suggest that physicians find it more difficult to adhere to norms of disclosure in situations where there is substantial uncertainty. They may be concerned that acknowledging their own uncertainty will undermine patient trust and create additional confusion and anxiety for the patient. We argue, in contrast, that effective disclosure will protect patient trust in the long run and that patients can manage information about uncertainty. In situations where there is substantial uncertainty, extra vigilance is required to ensure that patients are given the tools and information they need to participate in cooperative decision making about their care.

Beneficence↗
PubMed2000

The impact of patients' preferences on the treatment of atrial fibrillation: observational study of patient based decision analysis.

OBJECTIVE: To investigate the impact of patients' preferences for the treatment of atrial fibrillation, by using individualised decision analysis combining probability and utility assessments into a decision tree. DESIGN: Observational study based on interviews with patients. SETTING: Eight general practices in Avon. PARTICIPANTS: 260 randomly selected patients aged 70-85 years with atrial fibrillation. MAIN OUTCOME MEASURES: Patients' treatment preferences regarding anticoagulation treatment (warfarin) after individualised decision analysis; comparison of these preferences with treatment guidelines on the basis of comorbidity and absolute risk and compared with current prescription. RESULTS: Of 195 eligible patients, 97 participated in decision making using decision analysis. Among these 97, the decision analysis indicated that 59 (61%; 95% confidence interval 50% to 71%) would prefer anticoagulation treatment-considerably fewer than those who would be recommended treatment according to guidelines. There was marked disagreement between the decision analysis and guideline recommendations (kappa=0.25 or less). Of 38 patients whose decision analysis indicated a preference for anticoagulation, 17 (45%) were being prescribed warfarin; on the other hand, 28 (47%) of 59 patients were not being prescribed warfarin although the results of their decision analysis suggested they wanted to be. CONCLUSIONS: In the context of shared decision making, individualised decision analysis is valuable in a sizeable proportion of elderly patients with atrial fibrillation. Taking account of patients' preferences would lead to fewer prescriptions for warfarin than under published guideline recommendations. Decision analysis as a shared decision making tool should be evaluated in a randomised controlled trial.

Aged↗
PubMed2001

Cutting healthcare costs without rationing at the bedside: preserving the doctor-patient fiduciary relationship.

In his essay on bedside rationing, Peter Ubel argues that in an era of rising healthcare costs, it is time to relax the patient-centered ethic of physicians as unconditional patient advocates so they can individualize rationing decisions. This paper raises several concerns with the arguments and the examples he provides to make his case. First, he overlooks cost-effectiveness when making medical spending decisions. Second, his examples of wasteful, unproven and potentially harmful interventions call for physician education, not rationing, as he suggests. Third, informed patients can play a role in lowering costs through shared decision making. Fourth, individualized rationing decisions will worsen already pervasive disparities in medical care. The paper envisions the ideal cost-conscious physician as one who is knowledgeable about cost-effective practices, avoids unproven interventions whenever possible, and facilitates shared decision making through patient education. Such an individual would not, however, withhold interventions of proven benefit except when accommodating a patient's preferences for a particular therapy. The doctor and patient can only work together within the constraints of system-wide rationing if the fiduciary relationship is never violated.

Cost Savings↗
PubMedDate not supplied

Development of the Scale of Humanistic Nursing Behaviors.

The purpose of this study was to develop a reliable and theoretically based scale to measure the degree of humanistic health care in hospital settings as perceived by nursing personnel. Howard's (1975) theoretical model of dimensions pertinent to the domain of humanistic care was used to structure the scale. The dimensions are irreplaceability, holistic selves, freedom of action, status equality, shared decision making and responsibility, empathy, and positive affect. A 163-item scale reflective of Howard's dimensions was developed and distributed to 316 nursing personnel employed in four hospitals which included public, private, community, and university-affiliated health care facilities. Rigorous application of reliability and validity indexes yielded a final scale of 70 items measuring four dimensions: shared decision making and responsibility, holistic selves, status equality, and empathy. The Scale of Humanistic Nursing Behaviors can be used both as a diagnostic aid and as an instructional device.

Behavior↗
PubMed2005

Role of prefrontal and anterior cingulate regions in decision-making processes shared by memory and nonmemory tasks.

In the episodic retrieval (ER) domain, activations in right dorsolateral prefrontal cortex (DLPFC) are often attributed to postretrieval monitoring. Yet, right DLPFC activations are also frequently found during nonmemory tasks. To investigate the role of this region across different cognitive functions, we directly compared brain activity during ER and visual perception (VP) using event-related functional magnetic resonance imaging. In the ER task, participants decided whether words were old or new, whereas in the VP task, they decided which of the two colored screen areas was larger. In both tasks, each decision was followed by a confidence rating. The main finding was that right DLPFC (Brodmann area 46/10) activity was greater for low- than for high-confidence decisions in both tasks, demonstrating a general role in decision making. Even when reaction times (RTs) were included in the model, confidence remained the significant predictor of activity, suggesting that right DLPFC is involved in discontinuous evaluation rather than in continuous monitoring. In contrast, activity in anterior cingulate cortex was not only greater for low-confidence decisions but also increased with RT, reflecting a role in continuous conflict monitoring. Overall, the results demonstrate how direct cross-function comparisons clarify the generality and specificity of the functions of various brain regions.

Adult↗
PubMed2002

Provider-patient roles in chronic disease management.

Health care provider-patient role relationships can influence patient satisfaction, adherence to treatment, and health outcomes positively. Existing models of role relationships reflect one of three approaches to clinical management--paternalism, consumerism, or shared decision making. These models may or may not reflect the reality of chronic disease management in clinical practice. To characterize the nature of chronic disease management from the perspectives of primary care providers, we asked four nurse practitioners and four internists to describe the roles they saw for themselves and for their patients. A qualitative approach using a descriptive mode supported the formulation of a narrative description of these roles. The roles reflected a paternalistic approach to chronic disease management. The shared decision making approach supported in the literature was not evident. This finding is important for health professional education and practice.

Chronic Disease↗
PubMed2005

Decision counseling in cancer prevention and control.

Informed and shared decision making are hallmarks of quality medical care. Although decision aids (e.g., brochures, decision boards, videos, interactive computer programs) can impart useful information, there is a dearth of work on theory-based approaches that help people clarify preferences and select a favored alternative. Decision counseling is a novel method that has been developed to address this need. In a decision counseling session, provider and patient identify personal values associated with decision alternatives, weigh the influence of relevant factors, clarify preference, and select an option from available alternatives. Decision counseling is described here in relation to 3 decision-making situations (i.e., having cancer screening, being tested for cancer risk, and joining a cancer chemoprevention trial). Preliminary findings suggest that decision counseling can help to clarify personal preferences related to health behavior choices and, thus, facilitate achievement of the ideals of informed and shared decision making.

Colorectal Neoplasms↗
PubMed2005

Evidence-based decision making in dental practice.

For an evidence-based dental practice, shared decision making is made possible using an intuitive or analytic approach in reconciling best evidence and patient characteristics and preferences. Decision trees assist the dentist when presenting conditions and patient values are less certain in recommending treatment modalities whose benefits and harms are variable or unknown. Using clinical practice guidelines (or protocols organized within a decision tree), best evidence, based on the "average patient", is integrated into the decision tree. Probability, utility, and economic data are calculated and analyzed in providing the patient with informed and individualized choices of care. Evidence-based decision making results in a process in which an individual patient is informed of the best available evidence and all relevant options. The outcome of the process is that patient utilities and cost concerns are fully addressed in optimizing the clinical decision.

Journal Article↗
PubMed2003

"Fire away": the opening sequence in general practice consultations.

BACKGROUND: Proponents of recent models of the doctor-patient relationship, such as concordance and shared decision making, have emphasized mutuality rather than paternalism or consumerism. However, little attention has been paid so far to the ways in which this might actually be achieved. OBJECTIVES: The aims of this study were to establish whether there are any rules governing the opening sequence in general practice consultations, and to analyse the ways in which the observing or breaking of such rules contributes to the development of mutuality between patients and GPs. METHODS: The paper is based on a qualitative study of 62 patients consulting 20 GPs in 20 practices in the Midlands and Southeast of England. Consultations were audio recorded and transcribed; patients were interviewed before and after each consultation, and doctors were interviewed afterwards. Data were analysed using the sociological method of Conversation Analysis. The outcomes were participants' own understandings as demonstrated in their speech. RESULTS: A selection rule was identified whereby doctors choose between the questions "How are you?" and "What can I do for you?" to elicit patients' concerns. Deviations from this selection rule may be either repairable or strategic. Repairable deviance is based on misunderstanding between participants, and is resolved interactionally, usually by patients. Strategic deviance is the attempt by doctors to emphasize or de-emphasize certain aspects of their relationships with particular patients. Deviations from the rule which are not repaired lead to misalignment between participants. CONCLUSION: In relation to concordance, or shared decision making more generally, this analysis demonstrates that alignment or misalignment between participants will occur before any discussion about treatment options occurs. In cases of misalignment, concordance will be much harder to achieve. Mutuality is an achievement of both patients and doctors, and requires the active participation of patients.

Communication↗
PubMed2002

Making and sharing decisions about management with patients: the views and experiences of pre-registration house officers in general practice and hospital.

OBJECTIVES: To explore the views and experiences of pre-registration house officers (PRHOs) in general practice and hospital settings regarding the concept of patient partnership and their experience of involving patients in management decisions. DESIGN: The 12 PRHOs who had graduated from British universities and who were working within the Yorkshire Deanery were interviewed towards the end of their four-month general practice attachments. The interviews were semi-structured and analysed qualitatively. RESULTS: Three major themes emerged. The PRHOs perceived differences in approach between consultations carried out in hospital and primary care settings, with general practitioners being more likely to share information and decisions with patients. As medical students, the PRHOs had little opportunity to practise sharing information and management decisions with patients, and variable experience of this after graduation. On the whole they were favourable to the concept of patient partnership. CONCLUSIONS: Medical students and PRHOs lack training and opportunities to decide on management and discuss this with patients and yet, particularly in general practice settings, they have to practise these skills. The PRHOs had begun to develop strategies to decide how much information to give to patients and to what extent to involve patients in management decisions. This is an area that needs further consideration when planning both undergraduate and postgraduate medical education.

Attitude of Health Personnel↗
PubMed2003

What do patients value in their hospital care? An empirical perspective on autonomy centred bioethics.

OBJECTIVE: Contemporary ethical accounts of the patient-provider relationship emphasise respect for patient autonomy and shared decision making. We sought to examine the relative influence of involvement in decisions, confidence and trust in providers, and treatment with respect and dignity on patients' evaluations of their hospital care. DESIGN: Cross-sectional survey. SETTING: Fifty one hospitals in Massachusetts. PARTICIPANTS: Stratified random sample of adults (N=27 414) discharged from a medical, surgical, or maternity hospitalisation between January and March, 1998. Twelve thousand six hundred and eighty survey recipients responded. MAIN OUTCOME MEASURE: Respondent would definitely be willing to recommend the hospital to family and friends. RESULTS: In a logistic regression analysis, treatment with respect and dignity (odds ratio (OR) 3.4, 99% confidence interval (CI) 2.8 to 4.2) and confidence and trust in providers (OR 2.5, CI 2.1 to 3.0) were more strongly associated with willingness to recommend than having enough involvement in decisions (OR 1.4, CI 1.1 to 1.6). Courtesy and availability of staff (OR 2.5, CI 2.1 to 3.1), continuity and transition (OR 1.9, CI 1.5 to 2.2), attention to physical comfort (OR 1.8, CI 1.5 to 2.2), and coordination of care (OR 1.5, CI 1.3 to 1.8) were also significantly associated with willingness to recommend. CONCLUSIONS: Confidence and trust in providers and treatment with respect and dignity are more closely associated with patients' overall evaluations of their hospitals than adequate involvement in decisions. These findings challenge a narrow emphasis on patient autonomy and shared decision making, while arguing for increased attention to trust and respect in ethical models of health care.

Adolescent↗