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.     

Patient participation in the discussions of options in Spanish primary care consultations

Objectives

To determine patients'' participation in the discussion of options in primary care consultations. Identify the patients'' wish to participate and their perceptions of their participation and explore the potential factors that may influence these.

Design

Cross‐sectional study. Setting. Ninety‐seven general practices. Participants. six hundred and fifty‐eight patients who went to their doctors for unselected reasons. Measurements. All the encounters were videoed, patient participation in decision making (DM) was assessed with two tools. After the consultation, GPs completed a questionnaire about biomedical and relational information. Patients'' preferences and perception of participation was explored with different type of questions.

Results

Encounters successfully videoed: 638. Of these, only 90 interviews clearly showed patient participation. In 161 other interviews, patient participation was considered possible. Questionnaires collected: 645. In 60% of the situations (390 encounters), patients wished they could have stated their views about the proposed option(s), but they perceived this did not happen. The degree of participation at the consultation did not relate significantly with the physician''s ideas about the type of problem, evolution and treatment. Neither did any of the considered variables influence either the patients'' wish to participate in the discussion of the suggested option or their perception of this.

Conclusions

GPs ask patients for their opinion and promote discussion about the suggested plan in few encounters. Patients perceive this, including many patients that previously had declared not to be interested in being involved in decisions. These results revealed an important mismatch between what patients wish and what they perceive.     

Outcomes of Medicaid home- and community-based long-term services relative to nursing home care among dual eligibles

ObjectiveTo provide the first plausibly causal national estimates of health outcomes for older dual‐eligible recipients of Medicaid HCBS relative to nursing home care and to explore possible mechanisms for the effect.Data SourcesWe use 2005 and 2012 Medicaid Analytic eXtract (MAX), a national compilation of Medicaid claims, merged with Medicare claims to identify hospital admissions, our main outcome variable.Study DesignWe model the effects of HCBS using a longitudinal instrumental variables framework. To address the endogeneity of HCBS receipt, we instrument for it using the county percentage of nonelderly long‐term care users who receive HCBS. The percentage of nonelderly users is highly predictive of HCBS use for an elderly beneficiary, but because the instrument was derived from a separate population, the exclusion restriction is unlikely to be violated.Population Studied1,312,498 older adults (65+) dually enrolled in Medicaid and Medicare and are using long‐term care. We also examine heterogeneity of effects by race/ethnicity and the presence of dementia.Principal FindingsHCBS users have 10 percentage points higher (P < .01) annual rates of hospitalization than their nursing home counterparts when selection bias is addressed; rates of potentially avoidable hospitalizations are 3 percentage points higher (P < .01). These differences persist across races, dementia status, and intensity of HCBS spending.ConclusionsShifting Medicaid long‐term care funding for older adults from nursing homes to HCBS, while well‐motivated, results in the unintended consequence of substantially higher hospitalization rates for older dual eligibles. The quality and/or quantity of services may be inadequate for some HCBS recipients. Hospitalizations are costly to Medicare but also to the HCBS recipient in terms of stress and risks. Although consumer preferences to remain at home may outweigh poor outcomes of HCBS, the full costs and benefits need to be considered. HCBS outcomes—not just expansion—need more attention.     

Heart failure patients' descriptions of participation in structured home care

Background

To strengthen the patient''s position in health care, patient participation has been decreed in policy documents and legalizations. For patients suffering from heart failure, self‐care is an important part of disease management and participation is crucial to succeed with this.

Objective

To examine how heart failure patients receiving structured home care described participation in the care.

Design

Qualitative study.

Setting and participants

Thirteen men and six women, aged between 63 and 90 years, were interviewed. The informants received structured home care at four home care units in Sweden. The interviews were analysed using qualitative content analysis.

Results

Five categories with associated subcategories describing participation in care were identified: communication between patients and health‐care professionals (HCPs) including time and space for dialogue and exchange of care‐related information, accessibility to care through awareness of the plan for home visits or feasibility to initiate home visits, active involvement in care by engaging in self‐care and collaboration with HCPs, trustful relation with HCPs, with confidence in competence and individually adapted care, options for decision making, by making decisions or entrusting decisions.

Conclusions

Patient participation could be strengthened through structured home care. Participation was facilitated when there was a balance between the patient''s own preferences to influence care and the health‐care professional''s actions and values and the organization of care. Barriers to participation could depend on the health‐care organization, lack of continuity and confidence in HCPs.     

Battle on the home care front: perceptions of home care workers of factors influencing staff retention in Northern Ireland

The provision of home care services is a key component in avoiding inappropriate admission of older people to institutional care and preventing delayed discharge from hospital. However, there is a growing problem of retention of home care workers (HCWs), creating problems for delivering this increasingly essential service. The present study was based in a health and social services trust in Northern Ireland, and was designed to explore the growing problem of retention of HCWs from their own perspective. The cross-sectional survey design used a convenience sample and questionnaires were completed by 45 HCWs (response rate = 45 of 147, 31%). Responses to most questions were on five-point ordinal scales. Focus groups in which 12 HCWs participated were used to explore emerging themes. The variables studied were HCWs' perspectives on: (1) reasons for considering leaving; (2) working hours; (3) supervision and support, and qualifications and training; (4) workload pressures; (5) client attitudes; (6) pay; and (7) job satisfaction. The main reasons given by HCWs for dissatisfaction and considering leaving were (in rank order): (1) irregular and antisocial hours; (2) lack of management support; and (3) workload pressures. Commitment to caring seemed to be the reason why pay did not feature more highly for those who did not leave. Home care workers are being required to provide care for people with evermore-complex health and social care needs, and in an environment increasingly regulated in terms of quality and risk. This makes it an increasingly demanding job, which does not seem to be recognised in the training and working conditions of HCWs. The most significant factors identified give scope for service managers to improve the retention of HCWs.     

Professional and service-user perceptions of self-help in primary care mental health services

Self-help is becoming an increasingly accessible option for addressing mental health problems. Despite this, self-help is subject to a variety of interpretations, little is known about how professionals and service-users conceptualise self-help, or how service-users engage in self-help activities. This study aimed to explore the views of self-help by service-users and health professionals in one area of Scotland, including the perceptions of what constitutes self-help and how it might be used to address mental health problems in primary care. The research involved semistructured interviews with 31 primary care mental health professionals, and in-depth interviews with 34 service-users. We found that professionals and service-users describe self-help in different ways, which has great implications for referral to and implementation of self-help in primary care settings. It also emerged that self-help was not necessarily perceived to be able to address the causes of mental distress, which could leave some professionals defaulting to offering no interventions despite the fairly positive attitude service-users show to self-help strategies. Finally, professionals need to be convinced that interventions are useful, effective and accessible as there are significant barriers in professionals using self-help; if they are not convinced, such approaches will support their therapeutic approach. The research supports the need to develop methods of delivery that offer self-help as part of a broad package of care that also considers social causes of distress.     

Change in Advance Care Plans of Nursing Home Residents With Dementia and Pneumonia: Secondary Analysis of Randomized Controlled Trial Data

ObjectivesTo explore changes in advance care plans of nursing home residents with dementia following pneumonia, and factors associated with changes. Second, to explore factors associated with the person perceived by elderly care physicians as most influential in advance treatment decision making.DesignSecondary analysis of physician-reported PneuMonitor trial data.Setting and ParticipantsThe PneuMonitor trial took place between January 2012 and May 2015 in 32 nursing homes across the Netherlands; it involved 429 residents with dementia who developed pneumonia.MethodsWe compared advance care plans before and after the first pneumonia episode. Generalized logistic linear mixed models were used to explore associations of advance care plan changes with the person most influential in decision making, with demographics and indicators of disease progression. Exploratory analyses assessed associations with the person most influential in decision making.ResultsFor >90% of the residents, advance care plans had been established before the pneumonia. After pneumonia, treatment goals were revised in 15.9% of residents; 72% of all changes entailed refinements of goals. Significant associations with treatment goal changes were not found. Treatment plans changed in 20.0% of residents. Changes in treatment decisions were more likely for residents who were more severely ill (odds ratio 1.5, 95% CI 1.2-1.9) and those estimated to live <3 months (odds ratio 3.3, 95% CI 1.9-5.8). Physicians reported that a family member was often (47.4%) most influential in decision making. Who is most influential was associated with the resident’s dementia severity.Conclusions and ImplicationsOverall, changes in advance care plans after pneumonia diagnosis were small, suggesting stability of most preferences or limited dynamics in the advance care planning process. Advance care planning involving family is common for nursing home residents with dementia, but advance care planning with persons with dementia themselves is rare and requires more attention.     

Sustainable partnerships for integrated care: the role of decision making and its environment

This paper is intended to further the understanding of the role of the characteristics of decision making and its environment in the development of sustainable partnerships in health care, and to illustrate how this subject can be studied from a combined theoretical and methodological perspective. With the aid of a conceptual model covering sensitizing concepts from contingency theory (that refer to environmental characteristics--particularly institutions--the process course of decision making and its outcomes) and the case study methodology (explanation-building, triangulation, document study and interviews), two Dutch cases were analysed. The findings indicate which environmental characteristics are responsible for the differences in the process course and outcomes between the cases.     

Facilitators and barriers to person-centered planning from the perspectives of individuals receiving medicaid home and community-based services and care managers

BackgroundWhile person-centered planning is required within Medicaid Home and Community-Based Services (HCBS) programs, we know little about the extent to which it is being implemented and best approaches to measuring quality.ObjectiveOur study explored the experiences of individuals receiving Medicaid HCBS and care managers facilitating person-centered planning in three states to learn from their perspectives of facilitators and barriers.MethodsWe partnered with a national health plan and affiliated health plans in three states for recruitment. We used a semi-structured interview guide to conduct remote interviews with 13 individuals receiving HCBS and 31 care managers. To triangulate our findings, we reviewed assessment instruments from the three states and the person-centered care plans of HCBS recipients.ResultsFrom the perspectives of individuals receiving HCBS, facilitators to person-centered planning included: choice and control, personal goals and strengths, and relational communication. Care managers similarly identified the importance of relational communication, but also identified the development of measurable goals. Barriers from the perspectives of individuals receiving HCBS included: medical orientation of care plan, administrative and systemic barriers, and competencies of care managers. Care managers similarly identified administrative and systemic barriers.ConclusionsThis exploratory study provides important perspectives on implementation of person-centered planning. Findings can help inform improvements in policy and practice, as well as guide future directions in quality measure development and assessment.     

Experiences and perceptions of residential and home care services among older lesbian women and gay men in Australia

The needs of older lesbian and gay people regarding access and use of aged‐care services remain underresearched. This paper reports the findings of 33 qualitative interviews with older lesbian women and gay men about their perceptions and experiences of residential aged‐care and home‐based aged‐care services in Australia. The focus of this paper is their preparedness for using aged‐care services. The results highlight that participants had a number of concerns related to accessing residential‐care services in particular, including perceptions of a lack of inclusivity and concerns of potential for discrimination and hostility, loss of access to community and partners, decreased autonomy and concerns relating to quality of care and the potential for elder abuse. Participants noted a number of strategies they employed in avoiding residential‐care services, including the use of home‐care services, renovating the home for increased mobility, moving to locations with greater access to outside home‐care services, a preference for lesbian/gay‐specific housing and residential‐care options if available, and the option of voluntary euthanasia to ensure dignity and autonomy. Participants, on the whole, were hopeful that they would never require the use of residential‐care services, with some believing that having current good health or the support of friends could prevent this from happening. The findings suggest that older lesbian and gay people have a variety of concerns with aged‐care and may need additional support and education to improve their perceptions and experiences of services, whether these are needed presently or in the future.     

Achieving involvement: process outcomes from a cluster randomized trial of shared decision making skill development and use of risk communication aids in general practice

BACKGROUND: A consulting method known as 'shared decision making' (SDM) has been described and operationalized in terms of several 'competences'. One of these competences concerns the discussion of the risks and benefits of treatment or care options-'risk communication'. Few data exist on clinicians' ability to acquire skills and implement the competences of SDM or risk communication in consultations with patients. OBJECTIVE: The aims of this study were to evaluate the effects of skill development workshops for SDM and the use of risk communication aids on the process of consultations. METHODS: A cluster randomized trial with crossover was carried out with the participation of 20 recently qualified GPs in urban and rural general practices in Gwent, South Wales. A total of 747 patients with known atrial fibrillation, prostatism, menorrhagia or menopausal symptoms were invited to a consultation to review their condition or treatments. Half the consultations were randomly selected for audio-taping, of which 352 patients attended and were audio-taped successfully. After baseline, participating doctors were randomized to receive training in (i) SDM skills or (ii) the use of simple risk communication aids, using simulated patients. The alternative training was then provided for the final study phase. Patients were allocated randomly to a consultation during baseline or intervention 1 (SDM or risk communication aids) or intervention 2 phases. A randomly selected half of the consultations were audio-taped from each phase. Raters (independent, trained and blinded to study phase) assessed the audio-tapes using a validated scale to assess levels of patient involvement (OPTION: observing patient involvement), and to analyse the nature of risk information discussed. Clinicians completed questionnaires after each consultation, assessing perceived clinician-patient agreement and level of patient involvement in decisions. Multilevel modelling was carried out with the OPTION score as the dependent variable, and rater, consultation and clinician levels of data, standardized by rater within clinician. RESULTS: Following each of the interventions, the clinicians significantly increased their involvement of patients in decision making (OPTION score increased by 10.6 following risk communication training [95% confidence interval (CI) 7.9 -13.3; P < 0.001] and by 12.9 after SDM skill development (95% CI 10 -15.8, P < 0.001), a moderate effect size. The level of involvement achieved by the risk communication aids was significantly increased by the subsequent introduction of the skill development workshops (7.7 increase in OPTION score, 95% CI 3.4-12; P < 0.001). The alternative sequence (skills followed by risk communication aids) did not achieve this effect. The use of most risk information formats increased after the provision of specific risk communication aids (P < 0.001). Clinicians using the risk communication tools perceived significantly higher patient and clinician agreement on treatment (P < 0.001), patient satisfaction with information (P < 0.01), clinician satisfaction with decision (P < 0.01) and general overall satisfaction with the consultation (P < 0.001) than those who were exposed to SDM skill development workshops. CONCLUSIONS: These clinicians were able to acquire the skills to implement SDM competences and to use risk communication aids. Each intervention provided independent effects. Further progress towards greater patient involvement in health care decision making is possible, and skill development in this area should be incorporated into postgraduate professional development programmes.     

Organisation and features of hospital, intermediate care and social services in English sites with low rates of delayed discharge

In recent years, there has been significant concern, and policy activity, in relation to the problem of delayed discharges from hospital. Key elements of policy to tackle delays include new investment, the establishment of the Health and Social Care Change Agent Team, and the implementation of the Community Care (Delayed Discharge) Act 2003. Whilst the problem of delays has been widespread, some authorities have managed to tackle delays successfully. The aim of the qualitative study reported here was to investigate discharge practice and the organisation of services at sites with consistently low rates of delay, in order to identify factors supporting such good performance. Six 'high performing' English sites (each including a hospital trust, a local authority, and a primary care trust) were identified using a statistical model, and 42 interviews were undertaken with health and social services staff involved in discharge arrangements. Additionally, the authors set out to investigate the experiences of patients in the sites to examine whether there was a cost to patient care and outcomes of discharge arrangements in these sites, but unfortunately, it was not possible to secure sufficient patient participation. Whilst acknowledging the lack of patient experience and outcome data, a range of service elements was identified at the sites that contribute to the avoidance of delays, either through supporting efficiency within individual agencies or enabling more efficient joint working. Sites still struggling with delays should benefit from knowledge of this range. The government's reimbursement scheme appears to have been largely helpful in the study sites, prompting efficiency-driven changes to the organisation of services and discharge systems, but further focused research is required to provide clear evidence of its impact nationally, and in particular, how it impacts on staff, and patients and their families.