Patients' preferences for involvement in treatment decision making in Japan.
ABSTRACT: BACKGROUND: A number of previous studies have suggested that the Japanese have few opportunities to participate in medical decision-making, as a result both of entrenched physician paternalism and national characteristics of dependency and passivity. The hypothesis that Japanese patients would wish to participate in treatment decision-making if adequate information were provided, and the decision to be made was clearly identified, was tested by interview survey. METHODS: The subjects were diabetic patients at a single outpatient clinic in Kyoto. One of three case study vignettes (pneumonia, gangrene or cancer) was randomly assigned to each subject and, employing face-to-face interviews, the subjects were asked what their wishes would be as patients, for treatment information, participation in decision-making and family involvement. RESULTS: 134 patients participated in the study, representing a response rate of 90%. The overall proportions of respondents who preferred active, collaborative, and passive roles were 12%, 71%, and 17%, respectively. Respondents to the cancer vignette were less likely to prefer an active role and were more likely to prefer family involvement in decision-making compared to non-cancer vignette respondents. If a physician's recommendation conflicted with their own wishes, 60% of the respondents for each vignette answered that they would choose to respect the physician's opinion, while few respondents would give the family's preference primary importance. CONCLUSIONS: Our study suggested that a majority of Japanese patients have positive attitudes towards participation in medical decision making if they are fully informed. Physicians will give greater patient satisfaction if they respond to the desire of patients for participation in decision-making.
Project description:BACKGROUND:Prostate-Specific Antigen (PSA) screening for early detection of prostate cancer (PCa) may prevent some cancer deaths, but also may miss some cancers or lead to unnecessary and potentially harmful treatment. Therefore, involving patients in decision-making about PSA screening is recommended. However, we know little about the attitude of men regarding participation in decisions about PSA screening and how to assess such attitudes. The purpose of this paper is to describe patient and public participation in the development of a national, web-based case vignette survey for studying men's view on participation in decision-making about PSA screening. METHODS:The project group developed a first draft plan for the survey, its vignettes and choice of measurements. This included multiple vignette variants representing various levels of patient participation in decision-making about PSA screening with different outcomes. Additionally, it included questions on respondents' satisfaction with imagined courses of health care, their propensity to initiate a malpractice complaint, their own health care experiences, socio-demography, personality, and preferences for control regarding health care decision-making. Following feedback from a workshop with academic peers on the draft plan, a group of 30 adult men was engaged to help develop case vignette versions and questionnaire items by providing feedback on structure, comprehension, response patterns, and time required to complete the survey. Furthermore, a panel of three patients with PCa experience was assembled to assist development through a separate review-and-feedback process. RESULTS:Based on reviews of survey drafts, the large group made further suggestions about construction of the survey (e.g. clarification and modification of case vignette versions, deletion of items and adjustment of wording, instructions to guide respondents, replacement of technical terms, and optimization of sequence of survey elements). The patient panel ensured fine-tuning of vignette versions and questionnaire items and helped review the internet version of the survey. CONCLUSIONS:Patient and public involvement during various phases of the survey development helped modify and refine survey structure and content. The survey exemplifies a way to measure health care users' satisfaction with imagined courses of health care and wish to complain, taking into account their characteristics.
Project description:There is debate about whether physicians should routinely provide patient surrogates with recommendations about limiting life support.To explore physicians' self-reported practices and attitudes.A cross-sectional, stratified survey of 1,000 randomly selected US critical care physicians was mailed. We included a vignette to experimentally examine how surrogate desire for a recommendation and physician agreement with the surrogate modified whether physicians would provide a recommendation.Proportion of respondents reporting they routinely provide surrogates with a recommendation and how responses varied based on vignette characteristics. A total of 608 (66%) of 922 eligible physicians participated. Approximately one (22%) in five reported always providing surrogates with a recommendation, whereas 1 (11%) in 10 reported rarely or never doing so. Almost all respondents reported comfort making recommendations (92%) and viewed them as appropriate (93%). Most also viewed recommendations as a critical care physician's duty (87%) and did not view them as unduly influential (80%). Approximately two-fifths (41%) believed recommendations were only appropriate if sought by surrogates. In response to the vignettes, nearly all respondents (91%) provided a recommendation when the surrogate requested a recommendation and the physician agreed with the surrogate's likely decision. Physicians were less likely to provide an unwanted recommendation, both when physicians agreed (29%) and disagreed with the surrogate's likely decision (44%).There is substantial variation among physicians' self-reported use of recommendations to surrogates of critically ill adults. Surrogates' desires for recommendations and physicians' agreement with surrogates' likely decisions may have important influence on whether recommendations are provided.
Project description:BACKGROUND:Bundled consent, the practice of obtaining anticipatory consent for a predefined set of intensive care unit procedures, increases the rate of informed consent conversations and incorporation of patients' wishes into medical decision-making without sacrificing patients' or surrogates' understanding. However, the adoption rate for this practice in academic and nonacademic centers in the United States is unknown. OBJECTIVE:To determine the national prevalence of use of bundled consent in adult intensive care units and opinions related to bundled consent. METHODS:A random sample of US hospitals with medical/surgical intensive care units was selected from the AHA [American Hospital Association] Guide. One intensive care unit provider (bedside nurse, nurse manager, or physician) from each hospital was asked to self-reportuse of per-procedure consent versus bundled consent, consent rate for intensive care unit procedures, and opinions about bundled consent. RESULTS:Of the 238 hospitals contacted, respondents from 100 (42%) completed the survey; 94% of respondents were nurses. The prevalence of bundled consent use was 15% (95% CI, 9%-24%). Respondents using per-procedure consent were more likely than those using bundled consent to self-report performing invasive procedures without consent. Users of bundled consent unanimously recommended the practice, and 49% of respondents using per-procedure consent reported interest in implementing bundled consent. RESULTS:Bundled consent use is uncommon in academic and nonacademic intensive care units, most likely because of conflicting evidence about the effect on patients and surrogate decision makers. Future work is needed to determine if patients, family members, and providers prefer bundled consent over per-procedure consent.
Project description:OBJECTIVE:To determine patients' preferences for a shared or directed style of consultation in the decision making part of the general practice consultation. DESIGN:Structured interview, with video vignettes of acted consultations. SETTING:5 practices in Lothian, Scotland. PARTICIPANTS:410 patients (adults and adults accompanying children) attending surgery appointments. MAIN OUTCOME MEASURES:Preference for shared or directed form of video vignette for five different presenting conditions. RESULTS:Patients varied in their preference for involvement in decision making in the consultation. Under multiple regression analysis, patients' preference was found to be independently predicted by the problem viewed (patients presented with physical problems preferred a directed approach), patients' age (patients aged 61 or older were more likely to prefer the directed approach), social class (social classes I and II were more likely to prefer the shared approach), and smoking status (smokers more likely to prefer the shared approach). Those patients who were able to answer (or who thought their doctor's style similar to those in the vignettes) were more likely to describe their own doctor's style as similar to their preferred style. No major association in preference was found with sex, frequency of attendance, or perceived chronic ill health. CONCLUSION:Patients may vary in their desire for involvement in decision making in consultations. Although this variation seems to depend on the presenting problem, age, social class, and smoking status, these associations are not absolute, with large minorities in each group. Doctors need the skills, knowledge of their patients, and the time to determine on which occasions, with which illnesses, and at which level their patients wish to be involved in decision making.
Project description:Hospitalized patients frequently lack decision-making ability, yet little is known about physicians' approaches to surrogate decision making.To describe physicians' experiences with surrogate communication and decision making for hospitalized adults.Cross-sectional written survey.Two hundred eighty-one physicians who recently cared for adult inpatients in one academic and two community hospitals.Key features of physicians' most recent surrogate decision-making experience, including the nature of the decision, the physician's reaction, physician-surrogate communication and physician-surrogate agreement about the best course of action.Nearly three fourths of physicians (73%, n = 206) had made a major decision with a surrogate during the past month. Although nearly all patients (90%) had a surrogate, physicians reported trouble contacting the surrogate in 21% of cases. Conflict was rare (5%), and a majority of physicians agreed with surrogates about the medical facts (77%), prognosis (72%) and best course of action (65%). After adjustment for patient, physician and decision characteristics, agreement about the best course of action was more common among surrogates for older patients [prevalence ratio (PR) = 1.17 for each decade; 95% confidence interval (CI) 1.02-1.31], ICU patients (PR = 1.40; CI 1.14-1.51) and patients who had previously discussed their wishes (PR = 1.60; CI 1.30-1.76), and less common when surrogates were difficult to contact (PR = 0.59; CI 0.29-0.92) or when the physician self-identified as Asian (PR = 0.60; CI 0.30-0.94).Surrogate decision making is common among hospitalized adults. Physician-surrogate decision making may be enhanced if patients discuss their preferences in advance and if physician contact with surrogate decision makers is facilitated.
Project description:<h4>Background</h4>Following passage of the Patient Self Determination Act in 1990, health care institutions that receive Medicare and Medicaid funding are required to inform patients of their right to make their health care preferences known through execution of a living will and/or to appoint a surrogate-decision maker. We evaluated the impact of external factors and perceived patient preferences on physicians' decisions to honor or forgo previously established advance directives (ADs). In addition, physician views regarding legal risk, patients' ability to comprehend complexities involved with their care, and impact of medical costs related to end-of-life care decisions were explored.<h4>Methods</h4>Attendees of two Mayo Clinic continuing medical education courses were surveyed. Three scenarios based in part on previously court-litigated matters assessed impact of external factors and perceived patient preferences on physician compliance with patient-articulated wishes regarding resuscitation. General questions measured respondents' perception of legal risk, concerns over patient knowledge of idiosyncrasies involved with their care, and impact medical costs may have on compliance with patient preferences. Responses indicating strength of agreement or disagreement with statements were treated as ordinal data and analyzed using the Cochran Armitage trend test.<h4>Results</h4>Three hundred eighty-eight of 951 surveys were completed (41% response rate). Eighty percent reported they were likely to honor a patient's AD despite its 5 year age. Fewer than half (41%) would honor the AD of a patient in ventricular fibrillation who had expressed a desire to "pass away in peace." Few (17%) would forgo an AD following a family's request for continued resuscitative treatment. A majority (52%) considered risk of liability to be lower when maintaining someone alive against their wishes than mistakenly failing to provide resuscitative efforts. A large percentage (74%) disagreed that patients could not appreciate complexities surrounding their care while 69% agreed that costs should never impact a physician's decision as to whether to comply with a patient's AD.<h4>Conclusions</h4>Our findings highlight the impact, albeit small, external factors have on physician AD compliance. Most respondents based their decision on the clinical situation at hand and interpretation of the patient's initial wishes and preferences expressed by the AD.
Project description:BACKGROUND:When a patient is incapable of making medical decisions for him- or herself, a substitute decision-maker makes choices according to the patient's previously expressed wishes, values and beliefs; however, little is known about public readiness to act as a substitute decision-maker in Canada. Our primary objective was to measure public self-reported preparedness to act as a substitute decision-maker, and explore the attitudes, barriers and enablers associated with preparedness. METHODS:From November 2017 to June 2018, we conducted a mixed-methods street intercept survey at 12 pedestrian areas in Ottawa, Ontario. We used descriptive statistics and logistic regression analysis to assess predictors of perceived preparedness to be a substitute decision-maker and determine support for high school education. We analyzed qualitative interview questions using inductive thematic analysis. RESULTS:Of the 626 eligible respondents, 196 refused to participate, leaving 430 participants (response rate 68.7%). A total of 404 surveys (94.0%) were fully complete with no missing data. The respondents were mostly female (243 [56.5%]) and residents of Ontario (364 [84.6%]). The average age was 33.9 years. Although 314 respondents (73.0%) felt prepared to be a substitute decision-maker, 194 (45.1%) reported never having had meaningful conversations with loved ones to understand their wishes in the event of critical illness. A total of 293 participants (68.1%) identified important barriers to feeling prepared. Most respondents (309 [71.9%]) agreed that high school students should learn about being a substitute decision-maker, citing age appropriateness, potential societal benefit and improved decision-making, while cautioning the need to respect different maturity levels, cultures and experiences. INTERPRETATION:he lack of conversation between loved ones reveals a gap between perceived and actual preparedness to be a substitute decision-maker for a loved one with a critical illness. The overall acceptability of high school education warrants further exploration.
Project description:<h4>Background</h4>Belgium's law on euthanasia allows only physicians to perform the act. We investigated the involvement of nurses in the decision-making and in the preparation and administration of life-ending drugs with a patient's explicit request (euthanasia) or without an explicit request. We also examined factors associated with these deaths.<h4>Methods</h4>In 2007, we surveyed 1678 nurses who, in an earlier survey, had reported caring for one or more patients who received a potential life-ending decision within the year before the survey. Eligible nurses were surveyed about their most recent case.<h4>Results</h4>The response rate was 76%. Overall, 128 nurses reported having cared for a patient who received euthanasia and 120 for a patient who received life-ending drugs without his or her explicit request. Respectively, 64% (75/117) and 69% (81/118) of these nurses were involved in the physician's decision-making process. More often this entailed an exchange of information on the patient's condition or the patient's or relatives' wishes (45% [34/117] and 51% [41/118]) than sharing in the decision-making (24% [18/117] and 31% [25/118]). The life-ending drugs were administered by the nurse in 12% of the cases of euthanasia, as compared with 45% of the cases of assisted death without an explicit request. In both types of assisted death, the nurses acted on the physician's orders but mostly in the physician's absence. Factors significantly associated with a nurse administering the life-ending drugs included being a male nurse working in a hospital (odds ratio [OR] 40.07, 95% confidence interval [CI] 7.37-217.79) and the patient being over 80 years old (OR 5.57, 95% CI 1.98-15.70).<h4>Interpretation</h4>By administering the life-ending drugs in some of the cases of euthanasia, and in almost half of the cases without an explicit request from the patient, the nurses in our study operated beyond the legal margins of their profession.
Project description:BACKGROUND:It is not clear how lay people prioritize the various, sometimes conflicting, interests when they make surrogate medical decisions, especially in non-Western cultures. The extent such decisions are perspective-related is also not well documented. METHODS:We explored the relative importance of 28 surrogate decision-making factors to 120 Middle-Eastern (ME) and 120 East-Asian (EA) women from three perspectives, norm-perception (N), preference as patient (P), and preference as surrogate decision-maker (S). Each respondent force-ranked (one to nine) 28 opinion-items according to each perspective. Items' ranks were analyzed by averaging-analysis and Q-methodology. RESULTS:Respondents' mean (SD) age was 33.2 (7.9) years; all ME were Muslims, 83% of EA were Christians. "Trying everything possible to save patient," "Improving patient health," "Patient pain and suffering," and/or "What is in the best interests of patient" were the three most-important items, whereas "Effect of caring for patient on all patients in society," "Effect of caring for patient on patients with same disease," and/or "Cost to society from caring for patient" were among the three least-important items, in each ME and EA perspectives. P-perspective assigned higher mean ranks to family and surrogate's needs and burdens-related items, and lower mean rank to "Fear of loss" than S-perspective (p<0.001). ME assigned higher mean ranks to "Medical facts" and "Surrogate own wishes for patient" and lower mean rank to "Family needs" in all perspectives (p<0.001). Q-methodology identified models that were relatively patient's preference-, patient's religious/spiritual beliefs-, or emotion-dependent (all perspectives); medical facts-dependent (N- and S-perspectives), financial needs-dependent (P- and S-perspectives), and family needs-dependent (P-perspective). CONCLUSIONS:1) Patient's health was more important than patient's preference to ME and EA women; society interest was least important. 2) Family and surrogate's needs/ burdens were more important, whereas fear of loss was less important to respondents as patients than as surrogate decision-makers. 3) Family needs were more important to EA than ME respondents, the opposite was true for medical facts and surrogate's wishes for patient. 4) Q-methodology models that relatively emphasized various surrogate decision-making factors overlapped the ME and EA women' three perspectives.
Project description:Participation in the decision-making process and health literacy may both affect health outcomes; data on how these factors are related among diverse groups are limited. This study examined the relationship between health literacy and decision-making preferences in a medically underserved population.We analyzed a sample of 576 primary care patients. Multivariable logistic regression was used to examine the independent association of health literacy (measured by the Rapid Estimate of Adult Literacy in Medicine-Revised) and patients' decision-making preferences (physician directed or patient involved), controlling for age, race/ethnicity, and gender. We tested whether having a regular doctor modified this association.Adequate health literacy (odds ratio [OR] = 1.7;P= 0.009) was significantly associated with preferring patient-involved decision making, controlling for age, race/ethnicity, and gender. Having a regular doctor did not modify this relationship. Males were significantly less likely to prefer patient-involved decision making (OR = 0.65;P= 0.024).Findings suggest health literacy affects decision-making preferences in medically underserved patients. More research is needed on how factors, such as patient knowledge or confidence, may influence decision-making preferences, particularly for those with limited health literacy.