Practices and perspectives of primary care physicians in Japan and the United States about diagnosing dementia: a qualitative study.

BACKGROUND: While dementia is a common problem in Japan and the US, primary care physicians' practices and perspectives about diagnosing dementia in these different healthcare systems are unknown. METHODS: Qualitative research was conducted in an ethnographic tradition using semi-structured interviews and thematic analysis in primary care settings across Japan and in the Midwest State of Michigan, US. Participants were a total of 48 primary care physicians, 24 each from Japan and the US participated. Both groups contained a mixture of geographic areas (rural/urban), gender, age, and years of experience as primary care physicians. RESULTS: Participants in Japan and the US voiced similar practices for making the diagnosis of dementia and held similar views about the desired benefits of diagnosing dementia. Differences were found in attitudes about the appropriate timing of formally diagnosing dementia. Japanese physicians tended to make a formal diagnosis when problems that would benefit from long-term care services emerged for family members. US physicians were more proactive in diagnosing dementia in the early stages by screening for dementia in health check-ups and promoting advance directives when the patients were still capable of decision-making. Views about appropriate timing of diagnostic testing for dementia in the two systems reflect what medical or nursing care services physicians can use to support dementia patients and caregivers. CONCLUSIONS: Benefits of making the diagnosis included the need to activate the long-term care services in Japan and for early intervention and authoring advance directives in the US. Testing to establish an early diagnosis of dementia by primary care physicians only partly relates to testing and treatment options available. Benefits of making the diagnosis included the need to activate the long-term care services in Japan and for early intervention and authoring advance directives in the US.

Needs and preferences among patients with high-grade glioma and their caregivers - A longitudinal mixed methods study.

Previous reports on the patient perspective of daily life during a 1-year high-grade glioma (HGG) trajectory from the time of diagnosis are sparse. The aim of this longitudinal mixed methods study is to identify the specific needs and preferences for rehabilitation and supportive care and how it links with physical activity, psychological measures and health quality longitudinally over the first year after diagnosis among patients with HGG and their caregivers by integrating qualitative and quantitative findings. Using a longitudinal mixed methods design, patients with malignant glioma (n = 30) and their caregivers (n = 33) were interviewed and completed questionnaires (patients only) about physical activity level, anxiety/depression and quality of life five times during the 1-year period. Their needs and preferences included interventions designed to re-define hope after diagnosis, health promoting physical activities initiated early, psychological symptom management strategies, and life planning. Caregivers are committed to their caregiving role, but their engagement is nonetheless challenged over time by enormous caregiver burdens. The identified specific needs and preferences favour supportive care, education, information and rehabilitation. Guidelines attentive to these needs and implemented in clinical practice have the potential to improve patients' health-related quality of life and support caregivers by involving them more actively in care and management.

Health-related quality of life in patients with serious non-specific symptoms undergoing evaluation for possible cancer and their experience during the process: a mixed methods study.

PURPOSE: The purpose of this research was to measure changes in HRQoL during the diagnostic evaluation of patients presenting with non-specific symptoms possibly attributable to cancer, to describe their experiences of HRQoL and to merge these findings with intent to obtain a more comprehensive understanding of their HRQoL experience during this stressful life event. METHODS: A convergent mixed methods (MM) design was used and involved quantitative data about HRQoL measured by the EORTC-QLQ-C30 instrument and qualitative interview data about patients' HRQoL experiences. Participants completed the EORTC-QLQ-C30 questionnaire prior to and after evaluation. The baseline questionnaire informed the purposive sampling for the qualitative interview study, and open-end questions matched to the EORTC-QLQ-C30 constructs were used in the semi-structured interviews. RESULTS: A total of 838 patients were enrolled in the quantitative study; 680 (81 %) also completed follow-up. Twenty-one patients participated in interviews. The MM findings are the meta-inferences drawn by looking across the matched quantitative and qualitative findings: physical function, social function, role function, emotional function, cognitive function, social function, symptoms and quality of life. CONCLUSION: The survey results illustrate that HRQoL improved over time and the qualitative findings confirmed and further expanded the survey results. The MM analysis underlines that the HRQoL experience cannot be observed independently from context. Participants adapted to their situation over time, and this may change their perceptions of HRQoL. These findings can be used to enhance evidence-based care as clinicians need to be aware of how the context influences the HRQoL experience.

Nemawashi essential for conducting research in Japan.

Nemawashi is a semi-formal but systematic and sequential consensus building procedure in Japan by which the approval of a proposed idea or project is sought from every person in a significant organizational position. For foreigners planning research in Japan, this concept has important implications since the project approval process is more obscure than in many Western countries. In this paper, I discuss observations as an outsider the research environment and culture in a Japanese hospital as seen from the inside, and draw conclusions for conducting research in Japan. From May to July of 1992, I was supported by the Japan-United States Educational Commission (the Fulbright Program) to interview physicians about end of life decision-making in Japan. The proposed project sought to obtain information on the way Japanese physicians use family and patient preferences in clinical decision-making. As I initiated the project, my Japanese advisor took great pains to explain the need for nemawashi to gain approval in my host institution. He underscored the importance of carefully informing every clinical and administrative person who might be affected by the proposed project, as well as the steps necessary for obtaining their endorsement. This process alone took three weeks and personal negotiations by my advisor at six levels before final project approval was granted by the dean. For actual data collection, my advisor made personal introductions to a high ranking physician from each department which greatly facilitated the scheduling of subsequent interviews with other faculty members in that department. The personal introductions by my host professor ensured 100% participant cooperation.(ABSTRACT TRUNCATED AT 250 WORDS)

Cancer disclosure in Japan: historical comparisons, current practices.

Although Japanese physicians historically have not disclosed cancer diagnoses to patients, pressures upon physicians to disclose have increased in recent years. We questioned physicians practicing at a private medical hospital in rural Japan about their current approach to cancer disclosure. We compared their responses with responses of physicians in a 1991 study conducted in Japan, and two studies conducted in the United States, in 1961 and in 1977. Seventy-seven clinically active physicians with experience treating cancer patients responded (73% response rate). Forty percent of respondents reported usually telling patients of a cancer diagnosis, over three times more than the 13% who reported such a policy in Japan in 1991. Physicians were significantly more likely (P < 0.001) to make exceptions than physicians in the previous Japanese study, and physicians in the previous U.S. studies. Respondents reported considering more factors in deciding whether to tell than participants in the 1977 U.S. study. Factors predicting an increased probability of disclosure included age (in a hyperbolic relationship), improved prognosis, breast or cervical cancer, and social status and religion (by a minority of respondents). Increase in a substitute decision maker's age was predictive for physicians not to involve the person in decision-making. Most respondents reported their disclosure policy is based on clinical experience. More respondents indicated a likelihood of changing in the future than respondents in the previous U.S. studies. These data suggest Japanese physicians are moving away from a rigid policy of nondisclosure to a policy of selective disclosure, but they have not adopted universal cancer disclosure as practiced in many Western countries. Since young age and advanced age predicted self-reports of not disclosing cancer diagnoses, these data raise the question of whether nondisclosure by age groups represents age discrimination or compassionate medical care tailored to individual patient needs.

Japanese patients' preferences for receiving cancer test results while in the United States: introducing an advance directive for cancer disclosure.

BACKGROUND: While disclosure of cancer is routine in the United States, it is not in Japan. The primary goals of this investigation were to describe overseas Japanese patients' preferences for participation in decisions about cancer; to delineate patients' beliefs about how physicians should make cancer disclosure decisions; and to assess patients' attitudes about a advance directive for cancer disclosure. METHODS: This ethnography utilized data from participant observations, 30 interviews, and lay materials. Using the analytic technique of immersion and crystallization the data were organized around major themes and subthemes. RESULTS: The mean age of the 30 participants was 38 years and most (n = 20) were female. While most patients expressed preferences to be told the results of cancer testing, the number who did not want to be told increased with more advanced cancer stage. Many participants believed decisions about disclosure should be influenced by a patient's personality, age, or gender, although the relative importance of these factors was variable. Virtually all believed circumstances existed when fully competent patients should not be told the cancer diagnosis. Most participants were supportive of using an advance directive for cancer disclosure. DISCUSSION: These participants' beliefs about many aspects of the management of cancer test results differ from recommended approaches to conveying cancer test results and discussing the cancer diagnosis in the United States. Most encourage the use of an advance directive for cancer disclosure as mechanism for physicians to elicit patients' unique preferences for participation in decision making about cancer.

Methylphenidate in the treatment of coma.

While there is significant morbidity and mortality involving patients in semicomatose and comatose states, the care of such patients has traditionally been limited to supportive measures. We report two cases of patients treated with methylphenidate hydrochloride: the first, a patient in a semicomatose state resulting from traumatic brain injury, and the second, a patient in a comatose state secondary to a subdural hematoma that occurred after a fall. Treatment with methylphenidate may provide neurostimulations by augmenting the activity of injured neuronal tissue within the reticular activating system, and by amplifying the net effect of the reduced number of viable neurons. Methylphenidate is a low-cost, potentially efficacious intervention for reducing the duration of comas, for preventing life-threatening and costly complications of prolonged unconsciousness, and for promoting early ambulation and recovery. Further research using more rigorous research designs to ascertain the effectiveness of methylphenidate in the treatment of patients in semicomatose and comatose states is needed.

Adverse events in primary care identified from a risk-management database.

BACKGROUND: The inevitability of adverse events in medicine arises from human fallibility, negligent care, limits of medical knowledge, risks inherent in medical practice, and biological variability among individuals. A better understanding of the nature and causes of adverse events is necessary to reduce their occurrence and limit their harm. This study describes adverse events identified from a risk-management database that occurred in an out-patient primary care setting. METHODS: Incident reports filed with the risk-management office of an academic medical center between January 1, 1991, and June 30, 1996, by eight primary health care clinics affiliated with the center were eligible for the study. Two independent reviewers assessed the incidents to determine whether there were adverse medical events. Incidents classified as adverse events were analyzed to determine the cause, potential preventability, and outcome. RESULTS: The prevalence of adverse events was 3.7 per 100,000 clinic visits over a period of 5 1/2 years. Twenty-nine of 35 (83%) adverse events were due to medical errors and were considered preventable. The causes of the adverse events included 9 diagnostic errors (26%), 11 treatment errors (31%), and 9 other errors (26%). Of the adverse events attributed to medical errors, 4 (14%) resulted in a permanent, disabling injury and 1 (3%) resulted in a death. CONCLUSIONS: Serious adverse events appear to occur infrequently in primary care outpatient practice, although these data probably underestimate the overall prevalence. To reduce or prevent the occurrence of adverse events in primary care, better systems for recognizing and tracking them and for assessing their causes are needed.

Paying for informed consent.

The Japanese Ministry of Health and Welfare has implemented a policy of paying physicians to explain the nature of the patient's medical condition and the treatment plan. We describe the precepts of this policy and examine ethical dimensions of this development. We question whether this policy will be sufficient to ensure patients will have the opportunity to become informed participants in medical decision making. The policy also raises a broader philosophical question as to whether informed consent is a fundamental ethical requirement of all doctor-patient encounters or an option that can be exercised by physicians for financial gain. The impact of this policy in Japan merits continued observation from abroad.

Family consent, communication, and advance directives for cancer disclosure: a Japanese case and discussion.

The dilemma of whether and how to disclose a diagnosis of cancer or of any other terminal illness continues to be a subject of worldwide interest. We present the case of a 62-year-old Japanese woman afflicted with advanced gall bladder cancer who had previously expressed a preference not to be told a diagnosis of cancer. The treating physician revealed the diagnosis to the family first, and then told the patient: "You don't have any cancer yet, but if we don't treat you, it will progress to a cancer". In our analysis, we examine the role of family consent, communication patterns (including ambiguous disclosure), and advance directives for cancer disclosure in Japan. Finally, we explore the implications for Edmund Pellegrino's proposal of "something close to autonomy" as a universal good.

Family physicians' perspectives on genetics and the human genome project.

The objective of the study was to determine family physicians' attitudes and beliefs about human genetics research and the human genome project (HGP). The design of the study involved qualitative, semi-structured interviews. Primary variables of interest included family physicians' training; their attitudes about the HGP; requests for genetics counseling; and their approaches to counseling requests. The setting was a medium-sized, Midwest, US city. The participants were 16 university-affiliated, community-based family physicians. For contents analysis, we used a coding scheme to identify illustrative themes and subthemes. While most of the family physicians reported familiarity with genetics and the HGP, and experiences with counseling requests, nearly all (15) reported little training in genetics counseling. Four major themes were identified: 1) impact on clinical care; 2) educational issues relevant to genetics and the HGP; 3) ethical concerns; and 4) family medicine responsibilities. These family physicians do not perceive genetics as having a substantial impact on their practice, but do expect major clinical changes in the future. Many feel there have been inadequate educational opportunities to learn about genetics, and some indicate reluctance to invest in self-education until genetic problems become more clinically relevant. These practitioners envision a role for family medicine the specialty to shape priorities in genetics research.

Effectiveness of vaginal Papanicolaou smear screening after total hysterectomy for benign disease.

OBJECTIVE: Using literature review, we assessed (1) Papanicolaou smear screening recommendations after hysterectomy for benign disease, (2) total hysterectomy for benign disease as a risk for vaginal dysplasia or carcinoma, and (3) effectiveness of screening for vaginal carcinoma after total hysterectomy for benign disease. DATA SOURCES: We considered (1) organizations' recommendations about screening, (2) references from major textbooks of gynecology, and (3) MEDLINE searches of English-language studies published from 1966 through 1995 using the search strategy (hysterectomy and vaginal smears) or (vaginal smears and vaginal neoplasms). STUDY SELECTION: Published or verbal confirmations of screening recommendations were eligible. Criteria for assessing risk of vaginal dysplasia or carcinoma included original research, documented reports of hysterectomy as an exposure, and evidence of preinvasive vaginal disease or vaginal carcinoma outcomes. We sought data assessing burden of suffering, screening efficacy, and effectiveness of early detection. DATA EXTRACTION: Descriptive and analytic data from each study were abstracted. DATA SYNTHESIS: Screening recommendations were categorized by the organizations' positions: two opposed screening, two supported screening, and six lacked specific guidelines. Data on the risk between total hysterectomy for benign disease and subsequent vaginal carcinoma were organized by study design (three case control, two cohort, and 13 case series) and described. Data on screening effectiveness were organized to address the criteria advocated by the US Preventive Services Task Force. CONCLUSIONS: There are conflicting guidelines on screening after hysterectomy and conflicting data on the risk of vaginal carcinoma after total hysterectomy for benign disease, though the best-designed research suggests no association. There is insufficient evidence to recommend routine vaginal smear screening in women after total hysterectomy for benign disease.

Conflict resolution at the end of life.

OBJECTIVE: Limited empirical research has examined how decisions are made when the preferences of terminally ill patients conflict with physicians' recommendations. This study sought to investigate physicians' strategies for resolving conflicts with dying patients. DESIGN: Cross-sectional, qualitative interviews. SUBJECTS: Subjects were 158 physicians caring for at least one terminally ill patient. SETTING: University medical center. MEASUREMENTS AND MAIN RESULTS: We analyzed physicians' responses to the open-ended interview questions, "How do you handle a situation when a patient wants a treatment that you believe does not provide any benefit?" and "How do you handle a situation when a patient does not want a treatment you think would be beneficial?" For patient requests of nonbeneficial treatments, physicians reported the following as important: negotiating with and educating patients (71%), deferring to patient requests for benign or uncomplicated treatments (34%), convincing patients to forgo treatments (33%), refusing patient requests for nonbeneficial treatment (22%), using family influence (16%), not offering futile treatments (13%), and referring to other physicians for disputed care (9%). Potential harm (23%) and cost of treatment (18%) were reasons cited for withholding treatments. In response to patient refusals of beneficial treatments, physicians report the following as important: negotiating with patients (59%), convincing patients to receive treatment (41%), assessing patient competence (32%), using family influence (27%), and referring to other physicians (21%). CONCLUSIONS: Physicians vary in the communication and negotiation strategies they use when their medical judgment conflicts with dying patients' preferences. Medical ethicists could play a greater role in teaching ethically important communication skills. Physicians providing care at the end of life report strategies for respecting patients that reflect graduated degrees of accommodation tailored to the costliness and riskiness of requests; they are most accepting of patient requests for benign, technically easy, inexpensive, and medically effective treatments.

How men view genetic testing for prostate cancer risk: findings from focus groups.

OBJECTIVE: To determine the values, beliefs, and attitudes that influence a man's intention to undergo or defer genetic testing for prostate cancer risk. DESIGN: Qualitative, using focus group interviews 12 focus groups were conducted to identify key values and beliefs about genetic testing for prostate cancer risk in anticipation of its future availability. SETTING: Medium-sized, mid-west, US city. PARTICIPANTS: Community sample of 90 lay men of diverse educational, ethnic, and age backgrounds. ANALYSIS: Descriptive statistics and immersion/crystallization to identify themes and sub-themes. RESULTS: The major areas of concern were distilled into the following. THEMES: beliefs about consequences, expectations, benefits for patients, beliefs about barriers, and susceptibility concerns. CONCLUSION: Identifying these men's values will help health professionals anticipate the informational and ethical needs of patients in the informed consent process. Men will need to understand how such testing may affect their planning regarding future prostate health, and how medical information is used outside of the physician patient relationship.

Physicians's reports on the impact of living wills at the end of life in Japan.

CONTEXT: A growing number of Japanese people have completed advance directives, especially living wills, even though there is no legislation recognising such documents and little empirical research on their impact on clinical care at the end of life in Japan. OBJECTIVES: To investigate physicians' attitudes about living wills and their experiences with patients who had completed a living will and later died. DESIGN: Self administered survey and qualitative study using open question and content analysis. SETTING: Japan. PARTICIPANTS: Physicians known to have cared for a patient who had presented a living will prior to death. MEASUREMENTS: The physician's response to receiving a living will, communication about the living will, the impact of the living will on clinical care, demographics, and their opinion on advance directives, especially living wills. MAIN RESULTS: Fifty five per cent of respondents approved of advance directives in general, and 34% had more opportunities to communicate with a patient and his/her family after receiving the living will. Sixty nine per cent of the physicians who received a living will did not, however, change their course of therapy as a consequence of receiving the living wills. Based on the analysis, we identified three areas of concern in the comments on living wills: (1) concerns relative to patients, physicians, and families; (2) social context, and (3) clinical and administrative concerns. The physicians raised various topics for discussion; they tended to describe the issues from a clinical perspective. CONCLUSIONS: Our identified areas of concern should prove helpful in better understanding the clinical and ethical implications of living wills in Japan.