Advocating Mandatory Patient ‘Autonomy’ in Healthcare: Adverse Reactions and Side Effects

Promoting patient autonomy has become a key imperative in health service encounters. We will examine the potential negative effects of over-promoting patient autonomy and consider the impact on patient access, their experience and the provision of equitable services by focusing on an extreme manifestation of this trend, i.e. calls for patient involvement in health care decision making to be mandatory. Advocates of mandatory autonomy hold that patients have a duty to themselves, to society and to the medical system to make decisions on their health care independently. Models of mandatory autonomy may be contrasted to those of optional autonomy that seek to ascertain patients’ decisional preferences and to understand wider limitations on their freedom to choose. Where choice as decisional responsibility becomes mandatory it ceases to promote agency and where autonomous choice is understood as an individualistic practice it will contribute to the cultural dominance of Western values. Moreover, taking a view that principlist ethics needs to take account of the social and cultural contexts of individual lives, we argue that if mandatory autonomy were to be over-emphasised as part of an ongoing move towards patient choice in UK National Health Service (NHS), educated and affluent people would be more able to exercise choices at the expense of people who are experienced in asserting preferences and who have the resources to make use of choices. We will argue that the promotion of autonomy needs to be tempered by steps to enable less powerful social, cultural and economic groups to contribute to decision making and to support individuals who may feel abandoned by having decisional responsibility transferred to them. Until constraints on individual choice can be understood and addressed, we advocate the model of optional autonomy used in shared decision making and make recommendations for practice, policy, education and research.     

Interprofessional Models for Shared Decision Making: The Role of the Health Care Chaplain

Shared decision making (SDM) is a central component of patient-centered care; however, a minimal amount is known about what health care chaplains contribute to this process. Data from 463 full-time chaplains practicing in the United States collected by an online survey was analyzed using SPSS 26 for bivariate and multivariate logistical regressions to identify variables impacting chaplain integration into SDM. Coding of free text responses yielded multiple domains for chaplain contributions and barriers. Thirty-eight percent of chaplains reported being often or frequently integrated into health care team discussions regarding medical decisions, with years of professional experience, time spent supporting the emotional processing of medical decisions, and being well-prepared as the strongest predictors for high integration. Qualitative analysis yielded a multifaceted picture that includes chaplain attention to the impact religion has on decision making, a focus on the patient story, and chaplains as mediators between patients, families, and the health care team. The full integration of chaplains into SDM will require education of the interdisciplinary team regarding the scope of chaplain knowledge and skills, as well as organizational level changes in chaplain to patient ratios and coverage models. In this era of increased fragmentation of health care provision and advancing complexity of medical decision making, models of Interprofessional Shared Decision Making (IP-SDM) such as the one proposed here that appreciate the specialized knowledge and skills of each member of the health care team hold promise for enhancing patient-centered care.     

Inside the black box of shared decision making: distinguishing between the process of involvement and who makes the decision

BACKGROUND: Shared decision making has practical implications for everyday health care. However, it stems from largely theoretical frameworks and is not widely implemented in routine practice. AIMS: We undertook an empirical study to inform understanding of shared decision making and how it can be operationalized more widely. METHOD: The study involved patients visiting UK general practitioners already well experienced in shared decision making. After these consultations, semi-structured telephone interviews were conducted and analysed using the constant comparative method of content analysis. RESULTS: All patients described at least some components of shared decision making but half appeared to perceive the decision as shared and half as 'patient-led'. However, patients exhibited some uncertainty about who had made the decision, reflecting different meanings of decision making from those described in the literature. A distinction is indicated between the process of involvement (option portrayal, exchange of information and exploring preferences for who makes the decision) and the actual decisional responsibility (who makes the decision). The process of involvement appeared to deliver benefits for patients, not the action of making the decision. Preferences for decisional responsibility varied during some consultations, generating unsatisfactory interactions when actual decisional responsibility did not align with patient preferences at that stage of a consultation. However, when conducted well, shared decision making enhanced reported satisfaction, understanding and confidence in the decisions. CONCLUSIONS: Practitioners can focus more on the process of involving patients in decision making rather than attaching importance to who actually makes the decision. They also need to be aware of the potential for changing patient preferences for decisional responsibility during a consultation and address non-alignment of patient preferences with the actual model of decision making if this occurs.     

Shared Decision Making in Health Care Settings: A Role for Social Work

Shared decision making (SDM) is a process integral to social work practice, one where the provider/professional and the consumer/patient discuss treatment alternatives based on patient values and life circumstances and make a shared decision about whether and how to proceed with treatment. Evidence-based medicine suggests that for many health conditions, having the choice of several effective treatment options is not uncommon. In these cases treatment should be based on what is best for the individual, since many factors influence an individual's treatment preference, including the psychological, social, cultural, and spiritual history she/he brings to the medical encounter; a history that has long been ignored in somatic health care. This article develops the argument that medical social workers possess the professional knowledge and skill base to provide decisional coaching, and implementing SDM in primary care settings. Of particular importance are the values that guide professional social work practice, including client self-determination, which is the basis of SDM, and the ability to maintain neutrality.     

Involving patients in decisions regarding preventive health interventions using the analytic hierarchy process

Practice guidelines that recommend active patient involvement in decisions about preventive health interventions are becoming increasingly common. These decisions frequently involve difficult trade‐offs between competing risks and benefits that require easily accessible information about the expected outcomes, superb doctor–patient communication, and effective integration of objective outcome data with individual values and preferences. Successful implementation of recommendations for shared decision‐making in preventive health care will require the development of efficient methods for making these complex decisions in busy practice settings. This article describes how the analytic hierarchy process, a multiple criteria decision‐making method, could facilitate successful implementation of shared decision‐making regarding preventive health care in clinical practice. The method is illustrated using recent guidelines for colorectal cancer screening for average risk patients issued by the American Gastroenterological Association.     

Shared decision making in clinical medicine: past research and future directions

CONTENT: Shared medical decision making is a process by which patients and providers consider outcome probabilities and patient preferences and reach a health care decision based on mutual agreement. Shared decision making is best used for problems involving medical uncertainty. During the process the provider-patient dyad considers treatment options and consequences and explores the fit of expected benefits and consequences of treatment with patient preferences for various outcomes. This paper reviews the literature on shared medical decision making. Several questions are considered. Although several studies suggest that patients do not want to be involved in decision making, these studies typically fail to separate decisions about technical aspects of treatment from preferences for outcomes. There is considerable evidence that patients want to be consulted about the impact of treatment. Studies on the acceptability of shared decision making for physicians have produced inconsistent results. Shared decision making is more acceptable to younger and better-educated patients. It remains unclear whether shared decision making requires expensive video presentations or whether the same results can be obtained with simpler methods, such as the decision board. We conclude that shared medical decision making is an important development in health care. More research is necessary to identify the effects of shared decision making on patient satisfaction and health outcomes. Further, more research is necessary in order to evaluate the most effective methods for engaging patients in decisions about their own health care.     

Validation of a decision regret scale.

BACKGROUND: As patients become more involved in health care decisions, there may be greater opportunity for decision regret. The authors could not find a validated, reliable tool for measuring regret after health care decisions. METHODS: A 5-item scale was administered to 4 patient groups making different health care decisions. Convergent validity was determined by examining the scale's correlation with satisfaction measures, decisional conflict, and health outcome measures. RESULTS: The scale showed good internal consistency (Cronbach's alpha = 0.81 to 0.92). It correlated strongly with decision satisfaction (r = -0.40 to -0.60), decisional conflict (r = 0.31 to 0.52), and overall rated quality of life (r = -0.25 to -0.27). Groups differing on feelings about a decision also differed on rated regret: F(2, 190) = 31.1, P < 0.001. Regret was greater among those who changed their decisions than those who did not, t(175) = 16.11, P < 0.001. CONCLUSIONS: The scale is a useful indicator of health care decision regret at a given point in time.     

Patient value: Perspectives from the advocacy community

All health‐care systems are under financial pressure and many have therefore developed value frameworks to assist decision making regarding access to treatment. Unfortunately, many frameworks simply reflect the clinically focused values held by health‐care professionals rather than outcomes that also matter to patients. It is difficult to define one single homogeneous set of patient values as these are shaped by social, religious and cultural factors, and health‐care environment, as well as many factors such as age, gender, education, family and friends and personal finances. Instead of focusing on an aggregated set of values, frameworks should attempt to incorporate the broader range of outcomes that patients may regard as more relevant. Patient advocates are well placed to advise assessment bodies on how particular therapies will impact the patient population under consideration and should be closely involved in developing value frameworks. In this paper, a group of patient advocates explore the varying definitions of patient value and make positive recommendations for working together to strengthen the patient voice in this area. The authors call on framework developers, the patient advocacy and research communities, the health‐care industry and decision‐makers to undertake specific actions to ensure patient value is included in current and future value frameworks. This is justified on compassionate and economic grounds: better health outcomes result when patients receive treatment tailored to individual needs. Paying attention to the patient perspective also results in better use of resources—a goal that should appeal to all stakeholders.     

Decision Making on Medical Innovations in a Changing Health Care Environment: Insights from Accountable Care Organizations and Payers on Personalized Medicine and Other Technologies

Background

New payment and care organization approaches, such as those of accountable care organizations (ACOs), are reshaping accountability and shifting risk, as well as decision making, from payers to providers, within the Triple Aim context of health reform. The Triple Aim calls for improving experience of care, improving health of populations, and reducing health care costs.

Influence of Shared Decision Making on Decisional Conflict and Regret in Postpartum Mother–Infant Care: A Randomized Controlled Trial

ObjectivesAlthough postpartum rooming-in is encouraged by the World Health Organization, independent separated nursery care is still widely adopted in Eastern countries. Our aim is to evaluate the effect of shared decision making (SDM) assisted by patient decision aids on subjective decisional conflict and regret among women who are required to make choices regarding postpartum infant care.MethodsA total of 196 pregnant women who came for routine checkups 1 month before delivery were randomly assigned to the SDM group or the classic group. Before the mothers were discharged after delivery, their decision-making difficulties were evaluated. The primary outcome was the decisional conflict, which was assessed using the SURE (Sure of myself; Understand information; Risk-benefit ratio; Encouragement) scale. The secondary outcome was the decisional regret, which was measured using the Decision Regret scale.ResultsCompared with the classic group, SDM group had surer feelings about the choice (P＜.001), felt more confident about knowing the benefits and risks of each option (P＜.001), had a clearer understanding of the benefits and risks (P＜.001), and felt sufficiently supported with enough advice to make a suitable choice (P＜.001). No significant difference was noted in the Decision Regret scores between groups. The choice of 24-hour rooming-in, 12-hour rooming-in, and separated nursery care was not significantly different between groups.ConclusionsSDM reduced the decisional conflict and uncertainty of the mothers. Available choices of postpartum mother–infant care should be provided to mothers through SDM that includes individual values, health goals, and clear knowledge and transparency.     

‘Managing patient involvement’: provider perspectives on diabetes decision‐making

Background Most studies of shared decision‐making focus on acute treatment or screening decision‐making encounters, yet a significant proportion of primary care is concerned with managing patients with chronic disease. Aim To investigate provider perspectives on the role of patient involvement in chronic disease decision‐making. Design A qualitative, grounded theory study of patient involvement in diabetes care planning. Setting and participants Interviews were conducted with 29 providers (19 general practitioners, eight allied health providers, and two endocrinologists) who participated in diabetes care planning. Results Providers described a conflict between their responsibilities to deliver evidence‐based diabetes care and to respect patients’ rights to make decisions. While all were concerned with providing best possible diabetes care, they differed in the emphasis they placed on ‘treating to target’ or practicing ‘personalized care’. Those preferring to ‘treat to target’ were more assertive, while ‘personalized care’ meant being more accepting of the patient’s priorities. Providers sought to manage patient involvement in decision‐making according to their objectives. ‘Treating to target’ meant involving patients where necessary to tailor care to their needs and abilities, but limiting patient involvement in decisions about the overall agenda. ‘Personalized care’ meant involving patients to tailor care to patient preference. Discussion and conclusions Respecting a patient’s autonomy and delivering high‐quality diabetes care are important to providers. At times it may not be possible to do both, so a careful balance is required. Involving patients in decision‐making may be a means to this end, rather than an end in itself.     

Patient decision aids to support clinical decision making: evaluating the decision or the outcomes of the decision.

Decision aids (DAs) are tools to support patients make informed health decisions with their practitioner. They aim to improve patient knowledge of options, incorporate patient preferences and values, and increase patient involvement in health decision making. Increasingly, the debate about DAs concerns how they should be implemented in practice, with the view that DAs are superior to usual clinical care in facilitating health decisions. The authors challenge this view and suggest that DA research has focused on measures of decision process, leaving the effects on the outcome of the decision relatively unknown. It is still unclear in which conditions DAs are better for patient health and well-being than clinician-led decisions. The authors present a new randomized design to examine the effects of DA-supported patient choice on patient-centered outcomes to identify where DAs are best implemented in clinical practice. In this design, patients are randomized to 1 of 4 arms: intervention A, intervention B, choice of either intervention supported by a clinician, or choice of either intervention supported by a decision aid. Health and quality of life measured over the long term are presented as the primary outcomes. The authors propose that this design will allow the proper assessment of different modes of decision making.     

Decision Aid for Nutrition Support in Pediatric Oncology: A Pilot Study

Background: Despite the importance of nutrition support in preventing malnutrition in pediatric oncology, the decision to initiate and choose which nutrition support method is most appropriate can be difficult for parents and healthcare professionals. Decision aids are decision‐focused patient information materials. They can improve knowledge, reduce decisional conflict, improve patients’ risk perception, and increase patient participation in the decision‐making process. They have never been evaluated for pediatric oncology nutrition decisions. We aimed to develop and pilot test a decision aid to assist parents making these decisions in collaboration with their healthcare team. Materials and Methods: The decision aid was developed in accordance with the International Patient Decision Aid Standards guidelines and evaluated in a single‐center pilot study. The parents and healthcare professionals of pediatric oncology patients were eligible. Participants read the decision aid and completed a questionnaire assessing acceptability, usability, and improvement in understanding. Results: Thirty‐one parents and 15 healthcare professionals participated. Parents found the decision aid balanced, relevant, and satisfactory overall. Some parents reported the decision aid was too long (26%). Healthcare professionals positively rated the development process, usefulness to parents, and content and format of the decision aid. Forty‐three percent reported that using the decision aid would save them time. There were no significant associations between health literacy, decisional satisfaction, decisional regret, acceptability, and improvement in understanding. Conclusion: The decision aid appears acceptable and usable for our target population. Decision aid feedback provided critical data to make modifications before evaluating the decision aid in a randomized controlled trial.     

Making choices about medical interventions: the experience of disabled young people with degenerative conditions

Background Current western policy, including the UK, advocates choice for service users and their families, taking greater control and being more involved in decision making. However, children’s role in health decision making, especially from their own perspective, has received less research attention compared to doctors and parents’ perspectives. Objective To explore the perspective and experiences of disabled young people with degenerative conditions as they face significant medical interventions and engage in decision‐making processes. Design and methods Findings from a longitudinal qualitative study of 10 young people (13–22 years) with degenerative conditions are reported. Individual semi‐structured interviews were conducted with participants over 3 years (2007–2010); the paper reports data from all three interview rounds. Interviews focused on medical intervention choices the young people identified as significant. Results Although the young people in this study felt involved in the medical intervention choices discussed, findings demonstrate a complex and diverse picture of decision making. Results highlighted different decisional roles adopted by the young people, the importance of information heuristics and working with other people whilst engaging in complex processes weighing up different decisional factors. Discussion Young people’s experiences demonstrate the importance of moving beyond viewing health choices as technical or rational decisions. How each young person framed their decision was important. Recognizing this diversity and the importance of emerging themes, such as living a normal life, independence, fear of decisions viewed as ‘irreversible’ and the role of parents and peers in decision making highlights that, there are clear practice implications including, active practitioner listening, sensitivity and continued holistic family working.     

倡导以互联网开展病人教育 促进病人参与临床决策

中国正建立医疗保险制度，该制度要求医生与病人分担临床决策（做何种检查，选择什么治疗方法等）的责任，而不了解健康需求，不具备所患疾病的知识是患者参与临床决策的最大障碍，因此，开展病人教育，使病人具备所患疾病的知识并参与临床决策，既能节约国家医疗资源，节省病人费用，又能提高病人的健康素质和生活质量，互联网为开展病人教育提供了极好的媒体，因此我们呼呈以多种形式，多种媒体，特别是互联网开展病人教育活动，文章对开展病人教育的必要性，意义及利用互联网开展此项工作的的现实可能性及方法进行了探讨。     

Comprehending Care in a Medical Home: A Usual Source of Care and Patient Perceptions about Healthcare Communication

Objective: To examine whether having a usual source of care (USC) is associated with positive patient perceptions of health care communication and to identify demographic factors among patients with a USC that are independently associated with differing reports of how patients perceive their involvement in health care decision making. METHODS: Cross-sectional analyses of nationally representative data from the 2002 Medical Expenditure Panel Survey. Among adults with a health care visit in the past year (n = approximately 16,700), we measured independent associations between having a USC and patient perceptions of health care communication. Second, among respondents with a USC (n = approximately 18,000), we assessed the independent association between various demographic factors and indicators of patients' perceptions of their autonomy in making health care decisions. RESULTS: Approximately 78% of adults in the United States reported having a USC. Those with a USC were more likely to report that providers always listened to them, always explained things clearly, always showed respect, and always spent enough time with them. Patients who perceived higher levels of decision-making autonomy were non-Hispanic, had health insurance coverage, lived in rural areas, and had higher incomes. CONCLUSIONS: Patients with a USC were more likely to perceive positive health care interactions. Certain demographic factors among the subgroups of Medical Expenditure Panel Survey respondents with a USC were associated with patient perceptions of greater decision-making autonomy. Efforts to ensure universal access to a USC must be partnered with broader awareness and training of USC providers to engage patients from various demographic backgrounds equally when making health care decisions at the point of care.     

Provider perspectives on the utility of a colorectal cancer screening decision aid for facilitating shared decision making

Background Decision aids for colorectal cancer (CRC) screening have been shown to enable patients to identify a preferred screening option, but the extent to which such tools facilitate shared decision making (SDM) from the perspective of the provider is less well established. Objective Our goal was to elicit provider feedback regarding the impact of a CRC screening decision aid on SDM in the primary care setting. Methods Cross‐sectional survey. Participants Primary care providers participating in a clinical trial evaluating the impact of a novel CRC screening decision aid on SDM and adherence. Main outcomes Perceptions of the impact of the tool on decision‐making and implementation issues. Results Twenty‐nine of 42 (71%) eligible providers responded, including 27 internists and two nurse practitioners. The majority (>60%) felt that use of the tool complimented their usual approach, increased patient knowledge, helped patients identify a preferred screening option, improved the quality of decision making, saved time and increased patients’ desire to get screened. Respondents were more neutral is their assessment of whether the tool improved the overall quality of the patient visit or patient satisfaction. Fewer than 50% felt that the tool would be easy to implement into their practices or that it would be widely used by their colleagues. Conclusion Decision aids for CRC screening can improve the quality and efficiency of SDM from the provider perspective but future use is likely to depend on the extent to which barriers to implementation can be addressed.     

Communicating uncertainty can lead to less decision satisfaction: a necessary cost of involving patients in shared decision making?

Background Given the large number of interventions of uncertain effectiveness, research on communicating uncertainty is needed to examine its impact on patients’ health decisions. Objective To examine physicians’ communication of uncertainty and its impact on patients’ decisions and decision satisfaction. Design, setting, and participants Participants included female patients seen in a breast health centre whose physicians were discussing a decision with them, with no clear ‘best’ choice based on outcome evidence. Main variables Decision communication was measured using the OPTION scale, a measure of the degree to which physicians involve patients in a decision‐making process. One‐to‐two weeks after the discussion, patients reported their satisfaction with the decision‐making process and their decision. Decisions were verified in medical charts with patient consent. Results Seventy‐five women agreed to participate (94% response rate). The mean translated score of the OPTION scale was 68.0 (SD 18.3), but only 33.2 (SD 19.1) for the uncertainty items. Among cancer patients, communicating uncertainty was negatively related to decision satisfaction (P < 0.002), and there was an interaction between patient involvement in decisions and communicating uncertainty in relation to patients’ decision satisfaction (P < 0.03). Discussion Communicating scientific uncertainty might lead to less decision satisfaction among women facing cancer treatment decisions; this could be a natural outcome of the decision making process. Involving patients in decisions might help them tolerate uncertainty. Conclusion Future studies should consider assessing other outcomes (e.g. knowledge, physician support) of the decision making process. There may be trade‐offs between acknowledging uncertainty and immediate decision satisfaction.