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PubMed2004

Informed decision making: what is its role in cancer screening?

Interest in informed decision making (IDM) has grown in recent years. Greater patient involvement in decision making is consistent with recommendations to improve health care quality. This report provides an overview of IDM; clarifies the differences between IDM, shared decision making (SDM), and informed consent; and reviews the evidence to date about IDM for cancer screening. The authors also make recommendations for research. We define IDM as occurring when an individual understands the disease or condition being addressed and comprehends what the clinical service involves, including its benefits, risks, limitations, alternatives, and uncertainties; has considered his or her preferences and makes a decision consistent with them; and believes he or she has participated in decision making at the level desired. IDM interventions are used to facilitate informed decisions. The authors reviewed the evidence to date for IDM and cancer screening based primarily on published meta-analyses and a recent report for the Centers for Disease Control and Prevention's Guide to Community Preventive Services. IDM and SDM interventions, such as decision aids, result in improved knowledge, beliefs, risk perceptions, and combinations of these. Little or no evidence exists, however, regarding whether these interventions result in 1) participation in decision making at a level consistent with patient preferences or 2) effects on patient satisfaction with the decision-making process. These variables generally either were not assessed or were not reported in the articles reviewed. Results of interventions on uptake of screening were variable. After exposure to IDM/SDM interventions, most studies showed small decreases in prostate cancer screening, whereas four studies on breast and colorectal cancer screening showed small increases. Few data are available by which to evaluate current practices in cancer screening IDM. Patient participation in IDM should be facilitated for those who prefer it. More research is needed to assess the benefits of IDM/SDM interventions and to tailor interventions to individuals who are most likely to desire and benefit from them. There are many system barriers to IDM/SDM and few tools. More work is needed in this area as well. In addition, research is needed to learn how to incorporate IDM into ongoing clinical practice and to determine whether there are unintended negative consequences of IDM.

Community Health Services↗
PubMed2005

Colorectal cancer screening attitudes and practices preferences for decision making.

BACKGROUND: The availability of several effective screening options for colorectal cancer (CRC) screening calls for involving patients in decision making about CRC screening. The current study examined (1) participant characteristics associated with their preferences for participation in CRC screening decision making, (2) correspondence between participant preferences for decision making and their usual participation in decision making, and (3) associations between participant decision-making preferences and CRC screening practices and attitudes. METHODS: Data were obtained using a random, population-based telephone survey, conducted during August 2001 and April 2002, of 2119 community-living adults aged 50 to 75 years (56% female) residing in Long Island, NY. RESULTS: Overall, 77% reported that preferences for CRC screening decision making matched how screening decisions were usually made (simple kappa coefficient=0.67 [0.64-0.69]). Fifteen percent preferred to make screening decisions themselves, while 25% preferred to make decisions after considering their physician's opinion; nearly 50% preferred to share decision making, and 16% preferred that their physician make all screening decisions. Less education was associated with preferring that the physician make all screening decisions. Preferring physician involvement in screening decision making was associated with greater odds of citing no physician recommendation as a barrier to CRC screening, when compared to those who preferred no physician involvement. Preferring no physician involvement in decision making was associated with lower odds of reporting a recent CRC screening exam, as well as lower odds of endorsing positive attitudes and greater odds of endorsing negative attitudes toward CRC screening, when compared to participants who preferred physician involvement in decision making. Their attitudes also reflected intentions not to screen for CRC if they were asymptomatic, as well as the perception that they were not at personal risk for CRC. CONCLUSIONS: Several factors were identified as significantly associated with preferences for decision making and deserve further exploration for their application to clinical practice.

Aged↗
PubMed2006

Matching patient-specific expectations with physician-specific outcomes: towards transparency in treatment decision-making and consent.

This article hypothesizes that while the principles of evidence-based practice should serve as a guiding ideal for physicians, the manner in which this practice style is commonly implemented may be insufficient to the provision of truly informed decision-making and consent - especially in cases where outcomes are inextricably tied to technique, such as in the surgical subspecialities. Specifically, current methods of 'shared decision making' fail to adequately incorporate patient-specific expectations and physician-specific outcomes. A 'next-step', aimed at matching such expectations with outcomes is suggested and a method for implementation is presented.

Arthritis↗
PubMed2005

Family centred decision making and non-disclosure of diagnosis in a South East Asian oncology practice.

AIM: To audit the extent of non-disclosure of cancer diagnosis (NDD) in South-East Asian patients referred to a Western trained oncologist, and determine the factors associated with this pattern of decision-making. METHODS: Over a 12-month period, all new patients referred to a single radiation oncologist's practice were prospectively audited at time of the initial consultation. Data obtained included patient demographic features, tumour details, proposed treatment and decision-making process. A shared decision-making consultation was attempted but if there was a persistent request by family to avoid disclosure, then a family-centred model was adopted. Patient autonomy was maintained by formally asking desire to participate in decision-making process, and subsequent permission then sought to involve family members as surrogates. Treatment aim, predicted median survival and NDD was recorded at end of consultation. Endpoints of patient NDD and non-discussion of prognosis were audited over a 12-month period, and factors potentially associated with these endpoints were assessed. RESULTS: Over a 12-month period 369 new patients were referred to the oncologist's practice. Forty per cent were >65 years, 84% Chinese race, and 66% non-English speaking. Lung (33%) and breast (32%) primaries were prominent. Forty-seven per cent were managed with palliative intent and 24% had expected median survivals of <6 months. NDD was recorded in 66 patients or 17% of the patient group. Quantitative discussion of prognosis was avoided in 36.8% of patients. On univariate analysis advanced patient age (p<0.001, OR=9.6, 95% CI 4.9-18.9), female sex (p=0.035, OR=1.8, 95% CI 1.04-3.1), non-English speaking (p<0.001, OR=21.4, 95% CI 5.1-89.1), palliative treatment aim (p<0.001, OR=5.9, 95% CI 3.1-11.2) and short expected median survival (p<0.001, OR=4.0, 95% CI 2.3-7.1) were associated with NDD. Advanced patient age (p<0.001, OR=7.9, 95% CI 3.6-17.5), female sex (p<0.001, OR=6.4, 95% CI 2.8-14.7), non-English speaking (p=0.010, OR=7.4, 95% CI 1.6-33.3) and palliative treatment aim (p=0.010, OR=3.3, 95% CI 1.3-8.0) remained significantly associated with NDD on multivariate logistic regression analysis. CONCLUSIONS: A high rate of desired NDD is evident in this Asian oncology population when a family-centred model to medical decision making is used. This data confirms that NDD and the model of decision making remains a significant ethical issue.

Age Distribution↗
PubMed1989

Informed consent: a review.

Of paramount importance is the respect for autonomy and right to self-determination inherent in an ethically sound decision-making process. The President's Commission clearly summarized the prevailing view of informed consent when it stated: "ethically valid consent is a process of shared decision making based on mutual respect and participation, not a ritual to be equated with reciting the content of a form that details the risks of a particular treatment or intervention".

Decision Making↗
PubMed2001

Patient views on choice and participation in primary health care.

Within modern health care, much attention is given to the tasks of identifying patient preferences and then delivering health care services accordingly. Standardised solutions are not always acceptable to patients with divergent needs and preferences, and the growing number of treatment alternatives makes patient participation increasingly important. In order to identify individual preferences for choice and shared decision making, a survey was conducted among 1543 primary care patients in Sweden. As suggested by earlier work, special attention was paid to the strong link between patient preferences and age. Results show both similarities and differences in attitudes among young and old patient groups, and differences could be explained by a combination of life-cycle effects, cohort effects and expectations ensuing from the need for future health care contacts.

Adolescent↗
PubMed1999

When is a shared decision not (quite) a shared decision? Negotiating preferences in a general practice encounter.

We consider whether there are situations in which 'shared decision making' in primary care is inherently problematic, such as in the demand for antibiotics to treat viral disorders. In such an instance there might be a lack of the equipoise necessary for a decision-making context in which apparent choices are genuine options. Using the techniques of discourse analysis on the transcript of a consultation with the parents of an infant with tonsillitis, we illustrate how a general practitioner's (GP's) efforts to reach a 'shared decision' come unstuck through a combination of the embedded power imbalance and the conflict between the GP's own prescription preferences and those of the parent.

Decision Making↗
PubMed1990

Health care professionals and family involvement in care-related decisions concerning older patients.

This article examines care-related decision making within the context of in-home family care. It also uses the Andersen-Newman model to identify the correlates of physician involvement and centrality in decision making and the impact that it has on family members' caregiving satisfaction. Analysis of data from 244 family caregivers shows that elders (40%) and nuclear kin (53%) are key decision makers, indicating that families prefer to control care-related decisions. However, physicians are part of the decision-making process for nearly one fourth of the families in this study. The patient's impairment and the caregiver's education correlate with physician involvement in decision making. Shared residence and caregiver's overall satisfaction with the caregiving process correlate with physician centrality on the network. Discussion centers on implications for physician interactions with caregiving families around decision making. Included are indications for improved communication in decision-making contexts.

Aged↗
PubMed2001

Deliberative decision making and the treatment of pain.

In recent years, increased emphasis has been placed on the ethical duty of physicians to relieve pain and suffering. According to a 1992 report from The Agency for Health Care Policy Research (AHCPR), the "ethical obligation to manage pain and relieve the patient's suffering is at the core of a health care professional's commitment." However, despite the increased emphasis on the ethical duty to relieve pain, the undertreatment of pain continues to be a serious problem. This problem has been widely discussed, but so far efforts to respond to it have focused almost exclusively on institutional and educational solutions. Yet surprisingly in this discussion very little attention has been paid to articulating a constructive role for the patient in combating this problem. In this article I argue that adequate pain treatment will often require the active participation of the patient in the decision making process. Given the special nature of pain and the special problems that arise in the treatment of pain, adequate pain treatment requires that physicians and patients realize a particular model of shared decision making--one that I refer to as deliberative decision making. As will become clear, my defense of this model is limited to the context of pain management and may not apply in other clinical contexts.

Decision Making↗
PubMedDate not supplied

Impact of the Ottawa Decision Support Framework on the agreement and the difference between patients' and physicians' decisional conflict.

BACKGROUND: The Ottawa Decision Support Framework (ODSF) provides a process that facilitates shared decision making. OBJECTIVE: To assess the impact of implementing the ODSF on the agreement and the difference between patients' and physicians' decisional conflict scores. DESIGN: In total, 120 physicians and 903 patients enrolled in this before-and-after study. Implementation of the ODSF was composed of an interactive workshop, feedback, and a reminder at the point of care. The Decisional Conflict Scale (DCS) was completed by physicians and patients after a clinical encounter. RESULTS: The intraclass correlation coefficient was-0.205 +/- 0.096 (95% confidence interval [CI]= - 0.224 to -0.186) before implementing the ODSF and- 0.013 +/- 0.114 (95% CI = - 0.036 to 0.009) after. At the patient level, the following factors were significantly associated with the difference between the patients' and physicians' DCS: unemployed (P = 0.023), implementing the ODSF (P = 0.008), high school degree (P = 0.04), male (P = 0.03), and unilateral role in decision making (P = 0.03). At the physician level, provincial committee (P = 0.001), national committee (P = 0.045), clinical site (P = 0.016), reluctance to share uncertainty (P = 0.023), and anxiety due to uncertainty (P = 0.017) were significantly associated with this outcome. CONCLUSION: After implementing the ODSF, there was less dissimilarity between patients' and physicians' DSC than expected by chance than before. Implementing the ODSF was also found to be associated with the difference between patients' and physicians' DSC. The physician level explained a significant amount of the variance in this outcome, thus emphasizing the importance of an intervention at this level.

Adult↗
PubMed2006

Nature and frequency of exchanges on medications during primary care encounters.

OBJECTIVE: To describe the exchanges, related to discussion of all medications during primary care medical consultations. METHODS: Descriptive study of audio recordings of 422 medical encounters. Coding was done with MEDICODE, a validated instrument developed to analyse verbal exchanges on medications. The unit of analysis is the medication. RESULTS: An average of 3.9 medications (S.D.=2.8; range 1-21) are discussed per interview and 4.2 themes are broached for each drug (S.D.=2.6; range 1-17). "Active Discussed", "Represcribed" and "Newly Prescribed" drugs account for 43.1, 16.3 and 10.6%, respectively of all medications discussed. Themes most often discussed are Name, Instructions, Observed Main Effect, Class, Reasons for Taking the Drug, General Use of the Medication, Expected Effect on Symptoms, Form of the Medication, Indications Another Consultation Needed, and Alternative Medication. The least often discussed themes include clinically significant ones such as Possible Adverse Effects, Observed Adverse Effects, Expression of Attitudes and Emotions with regard to the medication, Compliance and Warnings. The average number of themes discussed differed between medications that were prescribed during the encounter, either New prescriptions or Represcribed drugs, compared to medications that were only discussed during the encounter. CONCLUSION: Our results show that medication discussions are heterogeneous and vary with the status of the medication and the theme. Also, the nature and extent of the discussions about medications do not support the shared-decision making model. PRACTICE IMPLICATIONS: Though it is too soon to make specific recommendations about discussions on medications, it seems clear that information-sharing about medications during medical encounters is a process that extends beyond any single encounter. Although communication skills are now part of most medical curriculums, there is an obvious need to put forth the concept of patient medication knowledge-building over multiple physician-patient encounters and to better prepare physicians to use the specific content and process skills necessary to revisit issues related to medications that seem necessary to support their patients' medication-taking practices.

Abstracting and Indexing↗
PubMedDate not supplied

Medical decision-making and information needs in end-stage renal disease patients.

Health information and decision-making are increasingly important to patients with diverse illnesses. The aim of this study was to examine health information needs and decision-making in individuals with end-stage renal disease (ESRD) and to examine the influence of age and gender. A self-report survey was administered to 197 consecutive ESRD patients receiving renal replacement therapy. Their mean age was 52.8 years; 58.2% were male, 64.3% were on hemodialysis, and 35.7% on peritoneal dialysis. Actual participation levels in decision-making were not necessarily in agreement with the preferred degree of participation. Eighty percent of patients wanted the health care team (HCT) to make their treatment decisions for them, but only 40% of those who preferred autonomous and 30% of those who preferred shared decision making with their HCT reported that this was their actual experience. Consequently, many more patients perceived that their decision-making was made by their HCT than preferred this. No significant gender differences were observed; however, older participants preferred and experienced their HCT make their treatment decisions (P<.05). All patients wanted high levels of information with some differences by gender and age. HCT should strive to ascertain and meet the information needs and treatment decision-making roles preferred by individual patients.

Attitude to Health↗
PubMedDate not supplied

Implications of patient and physician decision making: an illustration in treatment options for coronary artery disease.

The objective of this study was to explore the extent to which patients and physicians desire patient participation in medical decision making. The cross-sectional pilot study involved 92 patients with coronary artery disease (CAD) and 50 physicians involved in treating patients with CAD. Desire to participate in making the decision between treatment options for CAD and factors that influence the decision were assessed. Physicians prefer to participate in shared decision making more often than do the patients (P = .016). When faced with clinical scenarios requiring a decision to be made between percutaneous transluminal coronary angioplasty and coronary artery bypass graft, patients and physicians tended to defer to one another to make the decision. Multinomial logistic regression models showed that the overriding factor influencing patient decision making was the physician's opinion (P < .0001) and the patient's preference was the overriding factor influencing physician decision making (P < .0001). Because patients tend to defer to physicians when making medical decisions, it is incumbent upon the physician to assure that the physician-patient dialogue reflects important information about the procedures (coronary artery bypass graft and percutaneous transluminal coronary angioplasty) and that preferences are acknowledged. This may impact greatly on achieving satisfactory health outcomes and patient satisfaction.

Aged↗
PubMed2006

[Palliative chemotherapy and CUP-syndrome: medical intentions versus patients' attitudes in decision making].

The following case report is about a 55 year old male patient with CUP-syndrome. After developing a malignant bowel obstruction he received five cycles of a palliative chemotherapy with oxaliplatin and irinotecan. The focus is on medical intentions and goals concerning palliative chemotherapy and on discussing patients' attitudes towards chemotherapy. Communication is identified as fundamental skill in shared decision making. On the one hand it improves Patients' satisfaction and palliative care and on the other hand it reduces psychological and existential suffering. In tumors of unknown primary site regimens with different combinations of Platin, Taxol, Etoposide, Irinotecan and Gemcitabine showed responses up to 46% and a survival benefit with an overall median survival up to 12 months and even long term survival.

Adenocarcinoma, Scirrhous↗
PubMed2004

Pregnant women's preferences and knowledge of term breech management, in an Australian setting.

OBJECTIVE: To assess women's familiarity with breech presentation and external cephalic version (ECV), and to identify women's preferences and attitudes regarding breech management. DESIGN: Cross-sectional survey. SETTING: King George V (KGV) Memorial Hospital for Mothers and Babies, Sydney, Australia, a major metropolitan teaching hospital. POPULATION: 174 pregnant women (20-38 weeks gestation) attending KGV for antenatal care in 2001. METHODS: Data were obtained from a self-administered questionnaire that was distributed through the antenatal clinics. MAIN OUTCOME MEASURES: Women's familiarity of breech presentation and ECV, women's attitude towards ECV, decision to attempt ECV, and with whom participants would like to make a decision regarding ECV. FINDINGS: Of the 174 respondents, 85% could correctly identify breech presentation, and 66% had heard of ECV. For 87% this information was from books, and family/friends, and not their midwife/doctor. Equal numbers of women responded that they would or would not choose ECV (39%), and the remaining 22% were uncertain. Factors influencing their decision included concerns about the safety for the baby, ECV not guaranteeing vaginal birth despite successful version, and ECV not being effective enough. Seventy-two per cent wanted to make the decision to attempt ECV together with their doctor. CONCLUSION: Although the majority of the women had a preference for vaginal birth, their knowledge of ECV appeared insufficient to enable them to make informed decisions about attempting ECV. These findings suggest that care-providers should offer women information on ECV, in a shared-decision-making environment.

Adult↗
PubMed2002

Doctor-patient relationship: from medical paternalism to enhanced autonomy.

For centuries, physicians have been allowed to interfere and overrule patient's preferences with the aim of securing patient benefit or preventing harm. With the radical rise in emphasis on individual control and freedom, medical paternalism no longer receives unquestioned acceptance by society as the dominant mode for decision-making in health care. But neither is a decision-making approach based on absolute patient autonomy a satisfactory one. A more ethical and effective approach is to enhance a patient's autonomy by advocating a medical beneficence that incorporates patients' values and perspectives. This can be achieved through a model for shared decision making, acknowledging that though the final choices reside ultimately in patients, only through physician beneficence can the patient be empowered to make meaningful decisions that serve them best. For such a model to function effectively, the restoration of trust in doctor-patient relationship and the adoption of patient-centred communication are both crucial.

Decision Making↗
PubMedDate not supplied

A decision aid for women at increased risk for ovarian cancer.

This paper reviews changes that have occurred within and without the medical profession that have fostered an increasing demand for decision aids as adjuncts to practitioners' counseling to prepare patients for decision making. In the absence of data on the efficacy of ovarian cancer screening and prophylactic strategies, decisions about optimal care are difficult for both women and their doctors. Because surveillance and preventive options are an area of great uncertainty, a decision aid has been developed specifically aimed at facilitating decisions involving ovarian cancer risk management options. This was achieved by reviewing and integrating the available literature on models of medical decision making, patient preferences for information and involvement in decision making, the utility of decision aids, and management options for ovarian cancer risk. Findings indicate that patients wish to be informed participants in the decision-making process and that decision aids are an acceptable and effective method of providing quality information in a format that facilitates an inclusive model of shared decision making. A decision aid designed for women at increased risk of ovarian cancer that facilitates informed decision making may be a valuable addition to patient support. A randomized controlled trial of this type of educational material will provide timely and much needed evidence on its acceptability and efficacy.

Adult↗