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Survivors of intimate partner violence speak out: trust in the patient-provider relationship.

OBJECTIVE: To identify characteristics that facilitate trust in the patient-provider relationship among survivors of intimate partner violence (IPV). DESIGN: Semistructured, open-ended interviews were conducted to elicit participants' beliefs and attitudes about trust in interactions with health care providers. Using grounded theory methods, the transcripts were analyzed for common themes. A community advisory group, composed of advocates, counselors and IPV survivors, helped interpret themes and interview excerpts. Together, key components of trust were identified. SETTING: Eastern Massachusetts. PARTICIPANTS: Twenty-seven female survivors of IPV recruited from community-based IPV organizations. MAIN RESULTS: Participants' ages ranged from 18 to 56 years, 36% were African American, 32% Hispanic, and 18% white. We identified 5 dimensions of provider behavior that were uniquely important to the development of trust for these IPV survivors: 1) communication about abuse: provider was willing to openly discuss abuse; 2) professional competency: provider asked about abuse when appropriate and was familiar with medical and social histories; 3) practice style: provider was consistently accessible, respected confidentiality, and shared decision making; 4) caring: provider demonstrated personal concern beyond biomedical role through nonjudgmental and compassionate gestures, empowering statements, and persistent, committed behaviors; 5) emotional equality: provider shared personal information and feelings and was perceived by the participant as a friend. CONCLUSIONS: These IPV survivors identified dimensions of provider behavior that facilitate trust in their clinical relationship. Strengthening these provider behaviors may increase trust with patients and thus improve disclosure of and referral for IPV.

Adolescent↗

Preventive care for the menopausal woman.

In summary, menopause represents a stage in a woman's life for the primary care physician to have an important impact on health [43]. Decision-making must weigh individual risk factors for health disease, osteoporosis and breast cancer. Hormone replacement therapy remains an important issue for the postmenopausal woman [44]. More evidence is needed to define the specific health benefits and risks of HRT, particularly as it relates to the prevention of CHD. A patient centered approach using a shared decision making model is most likely to result in improved patient satisfaction and desired health outcome.

Adult↗

Pathway leadership: a mature framework for teams.

Shared Governance has been a successful organizational design for Central Baptist Hospital. We are addressing critical issues that impact our success, with involvement and facilitation of the employees who make up the organization. It will continue to change as our environment and system evolve. The movement from a traditional organizational structure and culture to one of embracing shared decision making gives leaders today an additional stressor. It is difficult to critically analyze your organization when you are faced daily with the external pressures of health care competition and the internal daily pressures of operations. It takes extra effort and introspection to recognize that you and your management team must undertake new and different behaviors to lead your organization into the next millennium. One thing is clear: If you do not create an environment that is flexible and able to accommodate change, your competitor will!

Communication↗

An entrustment model of consent for surgical treatment of life-threatening illness: perspective of patients requiring esophagectomy.

OBJECTIVE: Consent to treatment has been extensively discussed and prescribed from the viewpoint of law, ethics, and policy experts; the viewpoint of patients is less well represented. The purpose of this study was to describe the process of decision making and consent to surgical treatment from the patients' perspective, in the context of life-threatening illness. METHODS: Face-to-face interviews with 36 patients who had recovered from esophagectomy for cancer at university hospitals in Toronto, Ontario, were analyzed by means of a qualitative analytic approach. RESULTS: Instead of the accepted model of informed consent and shared decision making, patients identified 6 concepts that describe their experience: (1) cultural belief in surgical cure, (2) enhancement of trust through the referral process, (3) idealization of the specialist surgeon, (4) belief in expertise rather than medical information, (5) resignation to risks of treatment, and (6) acceptance of an expert recommendation as consent to treatment. These concepts were developed into a model of entrustment that unites the narratives of all our patients. CONCLUSIONS: There is a gap between accepted legal and ethical theories concerning consent and the patients' account of their experiences with surgical treatment of esophageal cancer. Although our findings should not be used to circumvent the ethical and legal requirements of the consent process and are limited to survivors of treatment of life-threatening disease, they support a careful reassessment of informed consent that includes the perspective of patients.

Adult↗

Dying in the ICU: perspectives of family members.

OBJECTIVE: To describe the perspectives of family members to the care provided to critically ill patients who died in the ICU. DESIGN: Multicenter, prospective, observational study. SETTING: Six university-affiliated ICUs across Canada. METHODS: Patients who received mechanical ventilation for > 48 h and who died in the ICU were eligible for this study. Three to four weeks after the patient's death, we mailed a validated questionnaire to one selected family member who made at least one visit to the patient in the ICU. We obtained self-rated levels of satisfaction with key aspects of end-of-life care, communication, and decision making, and the overall ICU experience. MAIN RESULTS: Questionnaires were mailed to 413 family members; 256 completed surveys were returned (response rate, 62.0%). In the final hours before the death of the patient, family members reported that patients were "totally comfortable" (34.8%), "very comfortable" (23.8%), or "mostly comfortable" (32.0%). Family members felt "very supported" (57.0%) and "supported" (30.7%) by the health-care team. Most (82.0%) believed that the patient's life was neither prolonged nor shortened unnecessarily. Most family members (90.4%) preferred some form of shared decision making. Overall, 52% of families rated their satisfaction with care as "excellent," 31% rated care as "very good," 10% as "good," 4% as "fair," and 2% as "poor." Overall satisfaction with end-of-life care was significantly associated with completeness of information received by the family member, respect and compassion shown to patient and family member, and satisfaction with amount or level of health care received. CONCLUSIONS: The majority of families of patients who died in participating ICUs were satisfied with the end-of-life care provided. Adequate communication, good decision making, and respect and compassion shown to both the dying patient and their family are key determinants to family satisfaction.

Aged↗

Making difficult decisions about hospice enrollment: what do patients and families want to know?

OBJECTIVES: To define patients' and families' priorities for information about hospice. DESIGN: Cross-sectional interview. SETTING: Urban, not-for-profit, Medicare-certified hospice. PARTICIPANTS: Patients and families recruited from consecutive hospice information visits. MEASUREMENTS: Understanding of hospice, assessment of the relative importance of eight categories of information (by direct rating and ranking tasks), and nurse observation of shared decision making between patient and family (5-point scale). RESULTS: Interviews were conducted with 237 patients and families at a hospice information visit. Forty percent (n=94) said that they knew anything about hospice. Most often, family members made the enrollment decision (n=132, 57%). Of the eight categories of information, patients and families placed the greatest importance on visit frequency (n=143, 60%), payment for hospice (n=140, 59%), and the practical help that hospice provides (n=123, 52%). Principal component factor analysis reduced the categories to three distinct factors reflecting concerns related to impending death, practical support, and changes from established patterns of care. CONCLUSION: Most patients and families who are referred for a hospice information visit know little about hospice and have substantial information needs. Referring physicians and hospice teams may be able to better support hospice enrollment decisions by anticipating common priorities for information.

Adult↗

Role of cognitive testing in the development of the CAHPS Hospital Survey.

OBJECTIVE: To describe how cognitive testing results were used to inform the modification and selection of items for the Consumer Assessment of Health Providers and Systems (CAHPS) Hospital Survey pilot test instrument. DATA SOURCES: Cognitive interviews were conducted on 31 subjects in two rounds of testing: in December 2002-January 2003 and in February 2003. In both rounds, interviews were conducted in northern California, southern California, Massachusetts, and North Carolina. STUDY DESIGN: A common protocol served as the basis for cognitive testing activities in each round. This protocol was modified to enable testing of the items as interviewer-administered and self-administered items and to allow members of each of three research teams to use their preferred cognitive research tools. DATA COLLECTION/EXTRACTION METHODS: Each research team independently summarized, documented, and reported their findings. Item-specific and general issues were noted. The results were reviewed and discussed by senior staff from each research team after each round of testing, to inform the acceptance, modification, or elimination of candidate items. PRINCIPAL FINDINGS: Many candidate items required modification because respondents lacked the information required to answer them, respondents failed to understand them consistently, the items were not measuring the constructs they were intended to measure, the items were based on erroneous assumptions about what respondents wanted or experienced during their hospitalization, or the items were asking respondents to make distinctions that were too fine for them to make. Cognitive interviewing enabled the detection of these problems; an understanding of the etiology of the problem informed item revisions. However, for some constructs, the revisions proved to be inadequate. Accordingly, items could not be developed to provide acceptable measures of certain constructs such as shared decision making, coordination of care, and delays in the admissions process. CONCLUSIONS: Cognitive testing is the most direct way of finding out whether respondents understand questions consistently, have the information needed to answer the questions, and can use the response alternatives provided to describe their experiences or their opinions accurately. Many of the candidate questions failed to meet these standards. Cognitive testing only evaluates the way in which respondents understand and answer questions. Although it does not directly assess the validity of the answers, it is a reasonable premise that cognitive problems will seriously compromise validity and reliability.

Adult↗

The TLC model of palliative care in the elderly: preliminary application in the assisted living setting.

Substantial shortfalls in the quality of palliative care of the elderly can be attributed to 5 fundamental flaws in the way end-of-life care is currently delivered. First, palliative care is viewed as a terminal event rather than a longitudinal process, resulting in a reactive approach and unnecessary preterminal distress in elderly patients suffering from chronic, slowly progressive illnesses. Second, palliative care is defined in terms of a false dichotomy between symptomatic and disease-focused treatment, which distracts attention from the proper focus of healing illness. Third, the decision about whether the focus of care should be palliative is not negotiated among patients, family members, and providers. Fourth, patient autonomy in making treatment choices is accorded undue prominence relative to more salient patient choices, such as coming to terms with their place in the trajectory of chronic illness. Fifth, palliative care is a parallel system rather than an integrated primary care process. A new theoretical framework--the TLC model--addresses these flaws in the provision of palliative care for elderly persons. In this model, optimal palliative care is envisioned as timely and team oriented, longitudinal, collaborative and comprehensive. The model is informed by the chronic illness care, shared decision making, and comprehensive geriatric assessment research literature, as well as previous palliative care research. Preliminary results of an intervention for elderly assisted living residents based on the TLC model support its promise as a framework for optimizing palliative care of elders.

Aged↗

Views of older adults on patient participation in medication-related decision making.

BACKGROUND: Medication decision making is complex, particularly for older patients with multiple conditions for whom benefits may be uncertain and health priorities may be variable. While patient input would seem important in the face of this uncertainty and variability, little is known about older patients' views of involvement in medication decision making. OBJECTIVE: To explore the views of older adults regarding participation in medication decision making. DESIGN: Qualitative study. PARTICIPANTS: Fifty-one persons at least 65 years old who consumed at least one medication were recruited from 3 senior centers and 4 physicians' offices. APPROACH: One-on-one interviews were conducted to uncover participants' perceptions of medication-related decision making through semistructured, open-ended questions. Themes were compared according to the constant comparative method of analysis. RESULTS: The predominant theme that emerged was the variability in perceptions concerning whether it was possible or desirable for patients to participate in prescribing decisions. For some participants, involvement was limited to sharing information. Physician and system factors that were felt to facilitate or impede patient participation included communication skills, the expanding number of medications available, multiple physicians prescribing for the same patient, and a focus on treating numbers. Perceived lack of knowledge, low self-efficacy, and fear were the patient factors mentioned. Both the presence and absence of trust in the prescribing physician were seen as alternatively impeding and enhancing patient participation. Only 1 participant explicitly mentioned patient preference, a cornerstone of shared decision making. CONCLUSIONS: While evolution to greater patient involvement in medication decision making may be possible, and desirable to some older patients, findings suggest that the transition will be challenging.

Age Factors↗

Decisional role preferences, risk knowledge and information interests in patients with multiple sclerosis.

OBJECTIVE: Shared decision making is increasingly recognized as the ideal model of patient-physician communication especially in chronic diseases with partially effective treatments as multiple sclerosis (MS). To evaluate prerequisite factors for this kind of decision making we studied patients' decisional role preferences in medical decision making, knowledge on risks, information interests and the relations between these factors in MS. METHODS: After conducting focus groups to generate hypotheses, 219 randomly selected patients from the MS Outpatient Clinic register (n = 1374) of the University Hospital Hamburg received mailed questionnaires on their knowledge of risks in MS, their perception of their own level of knowledge, information interests and role preferences. RESULTS: Most patients (79%) indicated that they preferred an active role in treatment decisions giving the shared decision and the informed choice model the highest priority. MS risk knowledge was low but questionnaire results depended on disease course, disease duration and ongoing immune therapy. Measured knowledge as well as perceived knowledge was only weakly correlated with preferences of active roles. Major information interests were related to symptom alleviation, diagnostic procedures and prognosis. CONCLUSION: Patients with MS claimed autonomous roles in their health care decisions. The weak correlation between knowledge and preferences for active roles implicates that other factors largely influence role preferences.

Adult↗

Decision-making in community-based paediatric physiotherapy: a qualitative study of children, parents and practitioners.

Approaches to practice based on partnership and shared decision-making with patients are now widely recommended in health and social care settings, but less attention has been given to these recommendations in children's services, and to the decision-making experiences of non-medical practitioners and their patients or clients. This study explored children's, parents' and practitioners' accounts of shared decision-making in the context of community-based physiotherapy services for children with cerebral palsy. Semi-structured interviews were conducted with 11 children with cerebral palsy living in an inner city area of northern England, and with 12 of their parents. Two focus groups were conducted with 10 physiotherapy practitioners. Data were analysed using the constant comparative method. When asked explicitly about decision-making, parents, children and practitioners reported little or no involvement, and each party saw the other as having responsibility for decisions. However, when talking in more concrete terms about their experiences, each party did report some involvement in decision-making. Practitioners' accounts focused on their responsibility for making decisions about resource allocation, and thereby, about the usefulness and intensity of interventions. Parents indicated that these practitioner-led decisions were sometimes in conflict with their aspirations for their child. Parents and children appeared to have most involvement in decisions about the acceptability and implementation of interventions. Children's involvement was more limited than parents'. While parents could legitimately curtail unacceptable interventions, children were mostly restricted to negotiating about how interventions were implemented. In these accounts the involvement of each party varied with the type of issue being decided and decision-making appeared more unilateral than shared. In advocating shared decision-making, greater understanding of its weaknesses as well as its strengths, and greater clarity about the domains that are suitable for a shared decision-making approach and the roles of different parties, would seem a helpful step.

Cerebral Palsy↗

Individualizing treatment decisions. The likelihood of being helped or harmed.

Clinical decision making cannot rely on evidence alone. Although significant advances have occurred in the development of high-quality evidence, similar efforts must be made to develop and evaluate tools that can be used at the bedside to individualize treatment decisions and to facilitate the incorporation of our patients' unique values and circumstances into the decision-making process. These tools should express the helpful and harmful effects of treatment, and it must be possible to modify these statements using patients' values. Finally, this process should be accomplished in real time in a busy clinical practice. In this article, the author outlines some of these decision support tools, describes an attempt to meet some of the challenges inherent in the goal of achieving effective shared decision making, and proposes a patient-centered measure of the likelihood of being helped and harmed by an intervention and discusses its derivation and an evaluation of its usefulness.

Anticoagulants↗

Mastectomy or lumpectomy? Helping women make informed choices.

PURPOSE: To develop an instrument to help clinicians inform their patients about surgical treatment options for the treatment of breast cancer and to evaluate the impact of the instrument on the clinical encounter. METHODS: We developed an instrument, called the Decision Board, to present information regarding the benefits and risks of breast-conserving therapy (lumpectomy plus radiation therapy) and mastectomy to women with early-stage breast cancer to enable them to express a preference for the type of surgery. Seven surgeons from different communities in Ontario administered the instrument to women with newly diagnosed clinical stage I or II breast cancer over an 18-month period. Patients and surgeons were interviewed regarding acceptability of the instrument. The rates of breast-conserving surgery performed by surgeons before and after the introduction of the instrument were compared. RESULTS: The Decision Board was administered to 175 patients; 98% reported that the Decision Board was easy to understand, and 81% indicated that it helped them make a decision. The average score on a true/false test of comprehension was 11.8 of 14 (84%) (range, 6 to 14). Surgeons found the Decision Board to be helpful in presenting information to patients in 91% of consultations. The rate of breast-conserving surgery decreased when the Decision Board was introduced (88% v 73%, P =.001) CONCLUSION: The Decision Board is a simple method to improve communication and facilitate shared decision making. It was well accepted by patients and surgeons and easily applied in the community.

Adult↗

Anticoagulant therapy. Will computer use improve outcomes?

BACKGROUND: Anticoagulant therapy has been steadily increasing in clinical practice. With its narrow therapeutic range for efficacy and adverse events, this trend can lead to greater morbidity and mortality, making it an increasingly significant clinical, economic, medicolegal and public health issue. OBJECTIVE: To examine issues and challenges arising from the increasing use of anticoagulants in general practice. DISCUSSION: Adherence and regular monitoring by an effective multidisciplinary health care team is critical to optimise anticoagulant therapy. Clinicians, carers and patients need good information, training and support. Adherence to anticoagulation therapy is influenced by clinician interest, skills and involvement in shared decision making and risk counselling. Computerised decision support, based on relevant and comprehensive guidelines for anticoagulant therapy, can improve the way patients and clinicians manage anticoagulant therapy.

Anticoagulants↗

Sarcoidosis: an update for the primary care physician.

Sarcoidosis is a systemic inflammatory disorder of unknown etiology, characterized by the formation of noncaseating granulomas, multisystem involvement, intrathoracic (pulmonary and lymph node) involvement in more than 90% of cases, and activation of T cells and macrophages at sites of granulomatous inflammation with the release of various chemokines and cytokines including tumor necrosis factor (TNF)-alpha. Despite the fact that sarcoidosis is seen all over the world, the study of its epidemiology has been a challenge for several reasons, including the lack of consistency in case definition, variability in disease presentation, the lack of sensitive and specific diagnostic tests, underrecognition and misdiagnosis of the disease, and a dearth of systematic epidemiologic studies. The ACCESS (A Case Control Etiologic Study of Sarcoidosis) study, a multicenter study done at 10 centers in the United States, is an attempt to better characterize the disease. A study of a subset of patients in the ACCESS study showed there was a delay in making the diagnosis of sarcoidosis, even when patients presented with pulmonary symptoms. The role of the primary care physician includes the establishment of a supportive physician-patient relationship. The morbidity and psychosocial problems associated with this condition necessitate educating patients about the disease because of the overwhelming concerns about its etiology, prognosis, and potential adverse effects of medication. This supportive role enhances patients' roles in the process of shared decision making during testing and treatment decisions.

Clinical Trials as Topic↗

Communication in genetic counselling for breast/ovarian cancer.

Cancer genetic counselling represents a very special situation of interaction between the geneticist and the counselee, marked by a number of specificities that account for its complexity. Cancer genetic counselling has multiple repercussions, such as identification of a deleterious genetic mutation associated with a high probability of developing breast and/or ovarian cancer, the implementation of preventive measures ranging from close surveillance to the decision to perform mutilating prophylactic surgical procedures, or the impact of the information on the other members of the counselee's family also concerned by the genetic risk. This chapter is based on a review of the literature that has been rapidly growing over recent years and on our clinical expertise as psycho-oncologists and geneticists. We will first present the reasons that make the information so critical. These reasons are both objective (complexity of the genetic information per se, difficulties of understanding the concept of risk) and subjective (information given to people with an emotionally charged family history and a perception of risks closely linked to their representation of cancer). At the same time, the counsellees are charged with the transmission of this information to members of their own family. We will then discuss the various modalities of communication in this setting. While unidirectional transfer of information from the geneticist to the counselee has been the preferred method in cancer genetics for a long time, a model based on patient-centered communication is more adequate in predictive medicine and allows shared decision making. In all cases, the different professionals involved in the process have to learn how to work in a performing cohesion. We also present the main guidelines on the subject and the various underlying objectives with regard to information delivery and the subject's personal experience. Although the psychological impact of genetic counselling consultations raises a number of questions, the results of preliminary studies are reassuring, demonstrating psychological benefits. However, a number of aspects concerning communication in predictive medicine remain to be investigated and improved.

Breast Neoplasms↗

"You're perfect for the procedure! Why don't you want it?" Elderly arthritis patients' unwillingness to consider total joint arthroplasty surgery: a qualitative study.

OBJECTIVE: To explore the process by which elderly persons make decisions about a surgical treatment, total joint arthroplasty (TJA). METHODS: In-depth interviews with 17 elderly individuals identified as potential candidates for TJA who were unwilling to undergo the procedure. RESULTS: For the majority of participants, decision making involved ongoing deliberation of the surgical option, often resulting in a deferral of the treatment decision. Three assumptions may constrain elderly persons from making a decision about surgery. First, some participants viewed osteoarthritis not as a disease but as a normal part of aging. Second, despite being candidates for TJA according to medical criteria, many participants believed candidacy required a level of pain and disability higher than their current level. Third, some participants believed that if they either required or would benefit from TJA, their physicians would advise surgery. CONCLUSION: These assumptions may limit the possibility for shared decision making. CLINICAL IMPLICATIONS: Emphasis should be directed toward thinking about ways in which discussions about TJA might be initiated (and by whom) and considering how patients' views on and knowledge of osteoarthritis in general might be addressed.

Aged↗

Community-based lifestyle interventions to prevent type 2 diabetes.

OBJECTIVE: To conduct a literature review of community-based interventions intended to prevent or delay type 2 diabetes. RESEARCH DESIGN AND METHODS: Recently published findings about the potential to prevent or delay type 2 diabetes with intensive lifestyle interventions prompted a literature search for community-based diabetes prevention interventions. The literature review design was a search of databases for publications in 1990-2001 that identified reports on community-based interventions designed to prevent or modify risk factors for type 2 diabetes. RESULTS: The search revealed 16 published interventions, 8 of which were conducted in the U.S. and involved populations disproportionately burdened by diabetes (e.g., American Indians, Native Hawaiians, Mexican Americans, and African Americans). Of the studies reporting results among youth, there were posttest improvements in intervention groups in knowledge, preventive behaviors, and self-esteem. Among studies reporting results among adults, most reported improvements in intervention groups in knowledge or adoption of regular physical activity. Several investigators offered important reflections about the process of engaging communities and sharing decision making in participatory research approaches, as well as insights about the expectations and limitations of community-based diabetes prevention research. Many of the studies reported limitations in their design, including the lack of control or comparison groups, low response rates or lack of information on nonresponders, or brief intervention periods. CONCLUSIONS: There is a critical need to conduct and publish reports on well-designed community-based diabetes prevention research and share information on the process, results, and lessons learned. Armed with recent positive findings about diabetes prevention and literature documenting community-based efforts, advocates at local, state, and national levels can collaborate to stem the rising tide of diabetes in communities.

Diabetes Mellitus, Type 2↗