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PubMed2001

Informed consent.

Physicians have an ethical and legal duty to obtain patients' informed consent before ordering testing and treatment. Informed consent encompasses informed refusal, the correlative right of patients to refuse tests and therapies they do not want. A patient's informed consent requires adequate information, capacity to decide, and absence of coercion. Informed consent is incorporated into a process of agreement between a patient and a physician called "shared decision making." The procedural requirements of informed consent vary as a function of the risks of the tests or treatments. Incompetent patients require surrogate decision makers to consent or refuse on their behalf. Older children and adolescents should be asked to provide their assent for treatment in addition to their parents' permission. Treatment may be provided in an emergency situation without consent if the treatment given represents the standard of emergency care. Consent of human subjects for participation in research requires that they fully understand their role and risks, not be coerced, and be allowed to withdraw at any time without penalty. Institutional review boards help guarantee the protection of human subjects. Vulnerable research subjects, such as children and the cognitively or mentally impaired, require additional protection.

Ethics, Medical↗

PubMed2001

Representing patient preference-related concepts for inclusion in electronic health records.

In recent years shared decision making between patients and their health care providers and the inclusion of patient preferences in patient care have been, in theory, embraced as models for good clinical practice. Patients' experiences, values, and preferences are increasingly acknowledged as important pieces of evidence for appropriate health care decision making. To effectively use information about patient preferences in patient care, this information, which is gathered through a process of preference elicitation, needs to be integrated with other types of information, e.g., diagnoses, treatments, and patient status indicators within the context of a longitudinal electronic health record. This integration requires that patient preference-related concepts be represented nonambiguously and in a manner that renders them suitable for computer rather than human processing. In this article, the authors describe important patient preference-related concepts and illustrate the use of the LOINC semantic structure as a terminology model to create fully specified names for a sample of 15 preference elicitations from 8 published research articles.

Decision Making↗

PubMed2006

Motivating for cancer prevention.

Effective habit change usually requires a combination of psycho-educational, behavioural, and social learning strategies. Motivational interview and shared decision making are likely to be the most efficient approaches. Assessing the current motivation can be based on the transtheoretical model of change (TTM) with the goal to move from one behaviour to another healthier one. In a daily busy clinical practice, brief counselling interventions of one to three visits can substantially help patients change problematic behaviours, particularly in the areas of smoking cessation and exercise. The acronym FRAMES has been used to define the elements of an effective brief intervention which helps to trigger the patient motivation to change; giving Feedback based on a thorough assessment; helping the patient take Responsibility for changing; giving clear Advice on what behaviour must change; offering a Menu of options for making the change; expressing Empathy for the ambivalence and difficulty in making changes; enhancing Self-efficacy to foster commitment and confidence. This chapter reviews relevant aspects of clinician-patient communication with regard to cancer prevention, especially smoking cessation and exercise.

Counseling↗

PubMed1993

Doctors as workers: work-hour regulations and interns' perceptions of responsibility, quality of care, and training.

OBJECTIVE: To study residents' perceptions of their responsibility for patients, the quality of patient care, and their learning experiences in light of new work-hour regulations. DESIGN: Inductive analysis of in-depth, semistructured, recorded interviews with a cohort of interns in internal medicine in the last month of their first postgraduate year. Questions were grounded in an examination of issues related to going off duty and delegating tasks to colleagues. Transcripts were independently analyzed by an interdisciplinary team. SETTING: New York University/Bellevue Hospital Center's residency program in internal medicine (in New York City). PARTICIPANTS: A cohort of 21 of a possible 24 interns in medicine on rotation at Bellevue Hospital Center. RESULTS: The interviews revealed: 1) intense concern harbored by interns for their patients with resulting difficulty in maintaining realistic boundaries between work and personal lives; 2) an open-ended workday and competing considerations confronting interns when deciding to leave the hospital--including concerns about leaving patients at critical junctures in their care, confidence in the colleague to whom they were signing out, regard for the workload of this colleague, and uneasiness about the educational consequences; 3) deterrents to acknowledging and acting on one's limits in performing medical work; and 4) a recurrent conflict between delegating responsibility and retaining control over patient care. CONCLUSION: Values traditionally learned in training emphasize autonomy and individual accountability. They may conflict with the shared decision making and collective responsibility among peers necessitated by work-hour limitations and associated changes in program structure.

Attitude of Health Personnel↗

PubMed2005

[Clinical guidelines. What do doctors and patients get from them].

Now more than ever physicians need effective management of the constantly increasing flood of medical information. The authors discuss possibilities for developing clinical guidelines as a core element of this information management and the requirements of these possibilities. The development of clinical guidelines is a process also suitable for involving patient and consumer expertise in health care. Models of involving patients are described and how these processes can build an important base for shared decision making of physicians and patients.

Drug Information Services↗

PubMed2005

Patient satisfaction and quality of life in cancer outpatients: results of the PASQOC study.

BACKGROUND: Satisfaction with care and quality of life (QoL) are indicative of the quality of care of cancer patients. The purpose of this study was to lay a cornerstone for patient-centred quality management by assessing the current status of satisfaction with care and QoL among oncological outpatients in Germany, and by identifying the key factors that determine a patient's willingness to recommend a medical facility. PATIENTS AND METHODS: A self-constructed and validated patient satisfaction questionnaire plus the SF-36 were distributed to a random sample of 3384 cancer patients who presented at 24 investigators' offices nationwide within a defined recruiting period and who met the inclusion criteria. The return rate was 81.9% (n=2772). A total of 2659 (78.6%) questionnaires were evaluable. The most common cancer types were breast (22.9%) and intestine (19.8%). RESULTS: Overall satisfaction was high, but specific reporting questions revealed many areas for improvement such as shared decision making, doctor-patient communication and organization of care. QoL was significantly impaired in many domains. Patient-provider relationship, facility setting and information on diagnosis and treatment options are major determinants of a patient's willingness to recommend a facility to a friend or relative if needed. CONCLUSIONS: This multicentre study focusing on patient perspectives highlights that, although the overall degree of satisfaction was quite high, there are numerous areas for improvement.

Adult↗

PubMed2005

Legal issues in caring for patients with kidney disease by selectively integrating complementary therapies.

Clinical integration of complementary and alternative medical (CAM) therapies, such as acupuncture and traditional oriental medicine, chiropractic, herbal medicine, massage therapy, and "mind-body" therapies, into conventional health care raises important legal and risk management issues. Understanding which CAM therapies patients use is legally prudent, as conventional treatment advice may interact with patients' own efforts toward self-care. In addition, nephrologists may limit potential liability for medical malpractice by classifying any given therapy as follows: (1) the medical evidence supports both safety and efficacy--recommend; (2) the medical evidence supports safety, but evidence regarding efficacy is inconclusive-accept but monitor; (3) the medical evidence supports efficacy, but evidence regarding safety is inconclusive-accept but monitor; and (4) the medical evidence indicates either serious risk or inefficacy--avoid and discourage. Applying this framework whether a therapy is labeled "conventional" or "CAM" is consistent with the key recommendation of the recent report by the Institute of Medicine at the National Academy of Sciences on Complementary and Alternative Medicine, namely, to apply the same principles and standards of evidence of treatment effectiveness to all treatments. Liability risk management also includes going beyond legal and ethical informed consent requirements by engaging the patient in shared decision making concerning all material treatment options, including CAM therapies, if supported by evidence. Physicians further should familiarize themselves with documentation standards suggested by the Federation of State Medical Board Guidelines and whether these are applicable in their state or home institution. These steps aim to enable nephrologists to respond to patient interest in CAM therapies in a way that is clinically responsible, ethically appropriate, and legally defensible.

Complementary Therapies↗

PubMed2004

Promoting informed decisions about cancer screening in communities and healthcare systems.

Individuals are increasingly involved in decisions about their health care. Shared decision making (SDM), an intervention in the clinical setting in which patients and providers collaborate in decision making, is an important approach for informing patients and involving them in their health care. However, SDM cannot bear the entire burden for informing and involving individuals. Population-oriented interventions to promote informed decision making (IDM) should also be explored. This review provides a conceptual background for population-oriented interventions to promote informed decisions (IDM interventions), followed by a systematic review of studies of IDM interventions to promote cancer screening. This review specifically asked whether IDM interventions (1) promote understanding of cancer screening, (2) facilitate participation in decision making about cancer screening at a level that is comfortable for individuals; or (3) encourage individuals to make cancer-screening decisions that are consistent with their preferences and values.Fifteen intervention arms met the intervention definition. They used small media, counseling, small-group education, provider-oriented strategies, or combinations of these to promote IDM. The interventions were generally consistent in improving individuals' knowledge about the disease, accuracy of risk perceptions, or knowledge and beliefs about the pros and cons of screening and treatment options. However, few studies evaluated whether these interventions resulted in individuals participating in decision making at a desirable level, or whether they led to decisions that were consistent with individuals' values and preferences. More research is needed on how best to promote and facilitate individuals' participation in health care. Work is especially needed on how to facilitate participation at a level desired by individuals, how to promote decisions by patients that are consistent with their preferences and values, how to perform effective and cost-effective IDM interventions for healthcare systems and providers and in community settings (outside of clinical settings), and how to implement these interventions in diverse populations (such as populations that are older, nonwhite, or disadvantaged). Finally, work is needed on the presence and magnitude of barriers to and harms of IDM interventions and how they might be avoided.

Community Health Services↗

PubMed2006

Patient-physician colorectal cancer screening discussions and screening use.

BACKGROUND: Little is known about patient-physician colorectal cancer (CRC) screening discussions or how discussion content affects screening use. Analyses conducted in 2004-2005 of patient-physician CRC screening discussion content and its association with screening use are described. METHODS: A mailed survey and retrospective claims data were used to compile information on insured, primary care patients aged 50 to 70 years (n = 4966). The survey collected information on patient-physician CRC screening discussion content (including the 5A's: assess, advise, agree, assist, and arrange). Survey responses were linked with 5-year retrospective claims data (ending December 31, 2003) on CRC screening use. Among patients reporting screening discussions, generalized estimating equation approaches were used to estimate the association of discussion content with screening use. RESULTS: Among those reporting discussion information (n = 2463), 80% reported discussing CRC screening with their physician. The content of these discussions varied, and only 54% used CRC screening. Multivariable model results indicated that the likelihood of screening was greater among patients reporting help scheduling an appointment (assist) (odds ratio [OR] = 2.69, 95% confidence interval [CI] = 1.95-3.72) and those reporting a discussion of results or follow-up (arrange) (OR = 1.63, 95% CI = 1.18-2.24), and lower among patients offered a choice among screening modalities (agree) (OR = 0.57, 95% CI = 0.37-0.86) as well as among those who wanted more screening information (OR = 0.65, 95% CI = 0.43-0.97). CONCLUSIONS: Not all patient-physician CRC screening discussions result in CRC screening use. It is important to understand which aspects of shared decision making and discussion content are likely to increase informed and value-concordant decisions to participate in recommended evidence-based CRC screening.

Aged↗

PubMed2004

Ethics and palliative care consultation in the intensive care unit.

It is clear that ethics and palliative care consultation have, in our view, much to offer intensivists as they attempt to work through the very complex and often tragic cases they face in their daily practice.Potential strengths include clarification of tangled normative issues, facilitation of shared decision making, conflict resolution,and expertise in the provision of comfort care. Despite this, it is an unfortunate fact that many intensivists remain reluctant to use ethics and palliative care services. There are, of course, many possible reasons for this, including the absence of quality services in certain institutions, issues, or power and control, and role misperceptions. It is our hope that we have helped to clarify appropriate roles for ethics and palliative care in the intensive care unit. We urge the continued development of quality ethics and palliative care services, and the use of those services by intensivists.

Attitude of Health Personnel↗

PubMed2005

A computerised guidance tree (decision aid) for hypertension, based on decision analysis: development and preliminary evaluation.

This paper discusses the piloting of a computerised decision aid that provides individualised information about hypertension to patients. The program is based on decision analysis, using decision trees as a way of structuring information. It incorporates the Framingham risk equation to assess a users' risk of coronary artery disease, together with a detailed assessment of the patient's current lifestyle and their willingness to change behaviour. Users of the program can decide how much or how little information they access. The program assesses individual's preferences for different treatment outcomes, before providing them with guidance on what might be the best treatment option for them. The program was evaluated by 10 patients with a diagnosis of mild to moderate hypertension and 8 health care professionals. Overall, both health care professionals and patients assessed the program positively. The use of a decision aid based on decision analysis may be a useful way of providing information to patients in order to promote shared decision making.

Aged↗

PubMed2006

Pediatric pain prevalence and parents' attitudes at a cancer hospital in Jordan.

There has been little research on implementation of pediatric pain programs. These studies are part of a project to develop such a program for the King Hussein Cancer Centre in Jordan. Study 1 captured information on pain prevalence in 35 children using chart reviews and parent/child interviews to establish baseline pain burden. Forty-seven percent of children had pain at the time of interview; 11% had "a lot" of pain and only 22% received analgesics. Twenty-two parents were interviewed in Study 2 to identify attitudes toward pain management. Thematic analysis revealed six themes: 1) pain can and should be managed; 2) God's will; 3) parent's worst pain was emotional pain due to child's diagnosis; 4) belief that their presence could ameliorate their child's pain; 5) desire for shared decision making; and 6) the child's responsibility to express pain. These study results were used to inform the action research approach in the overall project.

Adolescent↗

PubMed2026

Characteristics of children with ureteroceles presenting for urological evaluation in the modern medical era.

INTRODUCTION: Historically, children with ureteroceles presented symptomatically and were managed surgically. It is unclear if this changed in the modern medical era of prenatal imaging and shared decision making. We aimed to describe the presentation and management of ureteroceles during initial urological evaluation of children in the era of widespread prenatal ultrasonography. PATIENTS AND METHODS: We retrospectively reviewed records of children (<18 years old [yo]) initially evaluated at our center with a ureterocele (2011-2020). We analyzed demographics, renal anatomy, initial presentation for evaluation, and initial management with non-parametric statistics. Febrile urinary tract infections (fUTIs, ≥ 38 °C) were classified as 1) urosepsis (positive urine culture admitted to pediatric intensive care), 2) documented (positive urine culture) or 3) family-reported. RESULTS: We identified 188 children (65% female). Median age at presentation was 1.2 months old (mo) (IQR 18 days-4.4 mo). Antenatally-detected congenital anomalies of the kidney and urinary tract (aCAKUT) were noted in 143 (76%) children with a confirmed postnatal diagnosis of ureterocele. Overall, 129/188 (69%) children presented without symptoms and 59 (31%) presented with symptoms. fUTI was the most common symptomatic presentation (46/188, 24%): urosepsis (6 children), documented (30), and family-reported (10). Children with aCAKUT presented earlier than those without aCAKUT (27 days vs. 1.6 yo, p < 0.0001). They were also less likely to present with symptoms (11% vs. 96%, p < 0.0001), including fUTIs (7% vs. 78%, p < 0.0001). In total, 108 children (57%) were initially managed with transurethral incision, 73 (39%) were observed, and 7 (4%) had reconstructive surgery. Asymptomatic children with aCAKUT (42%) and symptomatic children without aCAKUT (37%) were more likely to be observed than symptomatic children with aCAKUT (7%, p = 0.02). Among 143 children with aCAKUT, those on antibiotic prophylaxis were less likely to present with a history of a fUTI compared to those not on prophylaxis (4/106 vs. 6/37, 4% vs. 16%, p = 0.02). COMMENT: We present a large observational study describing clinical and anatomical characteristics of children presenting with ureteroceles in a medical era of ubiquitous prenatal ultrasonography. Our retrospective study was limited by incomplete documentation of all antenatal ultrasonography and adherence with antibiotic prophylaxis. Long-term clinical outcomes will be the focus of future work. CONCLUSION: In contrast to historical cohorts, most children presented to urologists with asymptomatic ureteroceles diagnosed with aCAKUT. Most children without aCAKUT presented with a fUTI. Overall, 39% of children were initially observed, indicating an increased use of observation in the modern medical era.

Humans↗

PubMed2004

On the challenges of using evidence-based information: the role of clinical uncertainty.

Evidence-based medicine helps physicians appraise the latest and best evidence and incorporate patient's values in reaching a shared clinical decision. However, many decisions in medicine are made in the paucity of best evidence. Medical uncertainty remains inherent in clinical practice and contributes to significant variability in the way physicians and patients manage medical problems. Physicians and patients have varying degrees of tolerance for uncertainty. Intolerance to uncertainty among physicians results in increased test ordering tendencies, variability in medical treatment, failure to comply with evidence-based guidelines, and even guide career choices. Factors that result in the variability of physicians' interpretation of an effective treatment include: patient factors (prioritizing some factors over others), physician factors (lack of knowledge, lack of resources, medical uncertainty), and environmental factors (limitation of time and practice). Several approaches that have been found useful in implementing evidence in clinical practice include: sending reminders to prompt physicians to perform patient-related clinical activities, introducing computer information systems to support practice, and using interactive education interventions to teach newer skills and challenge negative attitudes. Passive educational approaches, like dissemination of guidelines and didactic lectures, are usually less useful in changing behavior. Among the techniques found to be useful for managing uncertainty are shared decision making, meticulous history taking, and physical examination, excluding worrisome differential diagnosis and establishing trust in patients. The role of future studies in assessing the outcome of multiple evidence-based strategies in situations of medical uncertainty remains to be explored.

Evidence-Based Medicine↗

PubMed2004

Nurses as information providers: facilitating understanding and communication of statistical information.

Nurses are increasingly being called upon to be the conveyers of important statistical information to patients. This trend is particularly evident in the domains of genetics and cancer screening. These new roles, however, demand new competencies, such as the ability to solve statistical problems, and the skill to communicate the answers effectively, as effective communication is an important ingredient in shared decision making. Genetic testing, perhaps more than other medical domains, relies heavily on the use of statistics. Being able to convey statistical information effectively is vital. In this paper, we illustrate the problems health care professionals have had in tackling and communicating statistical information. We introduce the natural frequencies method of solving Bayesian inference problems and review empirical evidence that shows the superiority of this format. Being able to transform probabilities into natural frequencies facilitates correct Bayesian inferences. It is argued that the conventional approach to educating nurses in Bayesian problem solving should be reconsidered and their statistical curriculum should be supplemented with instruction in using the natural frequency format.

Bayes Theorem↗

PubMed2005

Sharing decisions in consultations involving anti-psychotic medication: a qualitative study of psychiatrists' experiences.

In psychiatry, and in treating people with a diagnosis of schizophrenia in particular, there are obstacles to achieving concordant, shared decision making and in building a co-operative therapeutic alliance where mutual honesty is the norm. Studies of people with a diagnosis of schizophrenia have revealed critical views of medical authority, particularly over the issue of enforced compliance with antipsychotic medication. Psychiatrists are known to place particular value on such medication. This qualitative study reports the views of 21 general adult psychiatrists working in UK about their experiences of consultations involving discussion of antipsychotic medication. Interviewees reported a general commitment to achieving concordant relationships with patients and described a number of strategies they used to promote this. In this respect, their self-perception differs from the picture of authoritarian practice painted by critics of psychiatry, and by some studies reporting patients' views. Interviewees also described obstacles to achieving concordance, including adverse judgements of patients' competence and honesty about their medication use. Explaining the adverse effects of medication was perceived to discourage some patients from accepting this treatment. Moments of strategic dishonesty were reported. Psychiatrists perceived that trust could be damaged by episodes of coercion, or by patients' perception of coercive powers. We conclude that a self-perception of patient-centredness may not preclude psychiatrists from fulfilling a social control function.

Adult↗

PubMed1985

Informed consent and the gastrointestinal endoscopist.

The gastrointestinal endoscopist should be familiar with the Doctrine of Informed Consent. Although the concept is difficult to apply clinically, a reasonable approach is presented to the endoscopist. The ultimate goals of informed consent are shared decision making and self-determination, but it is important that the endoscopist also consider the potential legal liability when obtaining informed consent.

Endoscopy↗

PubMed1994

The use of prostate specific antigen for prostate cancer screening: a managed care perspective.

A large nonprofit staff model Health Maintenance Organization experienced increased use of prostate specific antigen (PSA) as a screening test for prostate cancer beginning in May 1991. A critical evaluation of the evidence in support of PSA screening was done and concluded that the use of PSA to screen for prostate cancer did not meet the criteria for an effective screening program. A guideline stating that PSA was not recommended as a screening test was implemented focusing on a model of shared decision making. PSA test ordering decreased significantly when patients were fully informed about the evidence for PSA screening. If PSA screening had continued at the peak rate, the cascade of intervention initiated by screening would have resulted in significant complications and approximately $4,800,000 in increased costs.

Health Maintenance Organizations↗