Impact of specialized pediatric palliative care programs on communication and decision-making

ObjectiveTo summarize and analyze the impact of specialized pediatric palliative care (SPPC) programs on communication and decision-making for children with life-threatening conditions.MethodsOur search strategy covered MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase through September 2018.ResultsWe reviewed 13 studies analyzing the impact of SPPC programs on communication and decision-making using a wide range of outcome indicators. Study quality was poor in 58% of included papers. SPPC programs improved communication and decision-making between families and healthcare professionals (HCPs), within and between families, and among HCPs.ConclusionSPPC programs generally support and improve communication and decision-making for children with life-threatening conditions, their families and associated HCPs. Families referred to an SPPC program had more discussions with HCPs on a broad variety of topics. However, data on communication with children, siblings, and other family members was scarce and of poor quality.Practice implicationsMore research on SPPC program efficacy is needed from the perspective of the ill child, as well as about barriers to end-of-life discussions and the specific aspects of SPPC programs responsible for improving outcomes.     

Incorporating shared decision making into communication with older adults with cancer and their caregivers: Development and evaluation of a geriatric shared decision-making communication skills training module

ObjectiveThe purpose of this study was to evaluate a Communication Skills Training (CST) module for health care providers (HCPs) applying a shared decision-making approach to a meeting with an older adult with cancer and his/her family.MethodsNinety-nine HCPs from community-based centers, cancer centers, and hospitals in the Northeastern U.S. who worked primarily with older adult patients participated in a CST module entitled Geriatric Shared Decision Making. Participants completed pre- and post-training Standardized Patient Assessments (SPAs) and a survey on their confidence in and intent to utilize skills taught.ResultsResults indicated high HCP satisfaction with the module, with over 95 % of participants reporting high endorsement to all five evaluation items. HCPs’ self-efficacy in utilizing communication skills related to geriatric shared decision making significantly increased pre- to post-training. In standardized patient assessments among a subset of providers (n = 30), HCPs demonstrated improvements in three shared decision-making skills: declare agenda, invite agenda, and check preference.ConclusionA geriatric shared decision-making CST workshop for HCPs showed feasibility, acceptability, and improvement in self-efficacy as well as skill uptake.Practice implicationsThis Geriatric Shared Decision-Making CST module provides an intervention for improving provider-patient-family member communication in the context of cancer care for older adults.     

Health-care practitioners’ preferences for the return of secondary findings from next-generation sequencing: a discrete choice experiment

PurposeHealth-care practitioners’ (HCPs) preferences for returning secondary findings (SFs) will influence guideline compliance, shared decision-making, and patient health outcomes. This study aimed to estimate HCPs’ preferences and willingness to support the return (WTSR) of SFs in Canada.MethodsA discrete choice experiment estimated HCPs’ preferences for the following attributes: disease risk, clinical utility, health consequences, prior experience, and patient preference. We analyzed responses with an error component mixed logit model and predicted WTSR using scenario analyses.ResultsTwo hundred fifty participants of 583 completed the questionnaire (completion rate: 42.9%). WTSR was significantly influenced by patient preference and SF outcome characteristics. HCPs’ WTSR was 78% (95% confidence interval: 74–81%) when returning SFs with available medical treatment, high penetrance, severe health consequences, and patient’s preference for return. Genetics professionals had a higher WTSR than HCPs of other types when returning SFs with clinical utility and patient preference to know. HCPs >55 years of age were more likely to return SFs compared with younger HCPs.ConclusionThis study identified factors that influence WTSR of SFs and indicates that HCPs make tradeoffs between patient preference and other outcome characteristics. The results can inform clinical scenarios and models aiming to understand shared decision-making, patient and family opportunity to benefit, and cost-effectiveness.     

Communicating with older adults with long-term conditions about self-management goals: A systematic review and thematic synthesis

ObjectiveTo synthesise a body of fine-grained observational research on communication between healthcare professionals (HCPs), older adults, and carers regarding self-management goals and actions.MethodsWe conducted a systematic review, searching nine electronic databases and the grey literature. Two reviewers independently selected for inclusion following a two-stage process and studies and discrepancies were resolved through consultation with the review team.Results898 records were retrieved, and eight studies were included in the review. Aggregative thematic analysis resulted in 13 categories of communication practices across three decision-making domains: (1) initiating: actions occurring prior to the commitment point; (2) proposing: putting forward a course of action; and (3) committing and closing: committing (or not) to the course of action.ConclusionsDespite an increasing emphasis on the importance of personalised care planning and shared decision-making (SDM) to support older people’s health and wellbeing, HCPs did not consistently practice this approach and, in some cases, worked in opposition to it.Practice implicationsWe encourage HCPs to prepare older adults to engage actively with SDM and the goal setting process by employing patient-centred communication resources. These could assist with identifying different types of goals that are realistic and relevant to patients in daily life.     

Examining the context and helpfulness of family companion contributions to older adults’ primary care visits

ObjectiveOlder adults commonly involve family (broadly defined) in their care. We examined communication behaviors of family companions during older adults’ primary care visits, including whether these behaviors vary with respect to how older adults manage their health, preferences for involving family in medical decision-making, and ratings of companion helpfulness.MethodsAnalysis of audio-taped primary care visits of older patients who were accompanied by a family companion (n = 30 dyads) and linked patient surveys.ResultsFamily companions predominantly facilitated doctor and patient information exchange. More than half of companion communication behaviors were directed at improving doctor understanding of the patient. Companions were more verbally active during visits of patients who delegated the management of their health to others than visits of patients who co-managed or self-managed their health. Companions were rated as more helpful by patients who preferred active involvement of family in medical decision-making.ConclusionFamily companion participation and helpfulness in primary care communication varies by patients’ preferences for involving family in medical decision-making and approach to manage their health.Practice implicationsResearch to examine the effects of clarifying patient and family companion expectations for primary care visits could inform strategies to improve the patient-centeredness of medical communication.     

Developing country-specific questions about end-of-life care for nursing home residents with advanced dementia using the nominal group technique with family caregivers

ObjectiveWe aimed to develop question prompt lists (QPLs) for family caregivers of nursing home residents with advanced dementia in the context of a study involving Canada, the Czech Republic, Italy, the Netherlands, the United Kingdom and Ireland, and to explore cross-national differences. QPLs can encourage family caregivers to ask questions about their relative’s end-of-life care.MethodsWe used nominal group methods to create country-specific QPLs. Family caregivers read an information booklet about end-of-life care for people with dementia, and generated questions to ask healthcare professionals. They also selected questions from a shortlist. We analyzed and compared the QPLs using content analysis.ResultsFour to 20 family caregivers per country were involved. QPLs ranged from 15 to 24 questions. A quarter (24%) of the questions appeared in more than one country’s QPL. One question was included in all QPLs: “Can you tell me more about palliative care in dementia?”.ConclusionFamily caregivers have many questions about dementia palliative care, but the local context may influence which questions specifically. Local end-user input is thus important to customize QPLs.Practice implicationsPrompts for family caregivers should attend to the unique information preferences among different countries. Further research is needed to evaluate the QPLs’ use.     

Barriers and facilitators to shared decision-making in neonatal medicine: A systematic review and thematic synthesis of parental perceptions

ObjectivesSystematically review parental perceptions of shared decision-making (SDM) in neonatology, identifying barriers and facilitators to implementation.MethodsElectronic database (Medline, PsycINFO, CINAHL and Scopus) and follow-up searches were conducted to identify qualitative studies. Data were extracted, thematically analysed and synthesised.ResultsSearches yielded 2445 papers, of which 25 were included. Thematic analysis identified six key themes. Key barriers included emotional crises experienced in the NICU setting, lack of medical information provided to parents to inform decision-making, inadequate communication of information, poor relationships with caregivers, lack of continuity in care, and perceived power imbalances between HCPs and parents. Key facilitators included clear, honest and compassionate communication of medical information, caring and empathetic caregivers, continuity in care, and tailored approaches that reflected parent’s desired level of involvement.ConclusionThe highly specialised environment, and the emotional crises experienced by parents impact significantly on their perceived capacity to engage in surrogate decision-making.Practice ImplicationsComplex and multi-factorial interventions that address the training needs of HCPs, and the emotional, informational and decision support needs of parents are needed. SDM skills training, improved information delivery, and integrated emotional and decisional support could help parents to become more involved in SDM for their infant.     

Improving shared decision-making in advance care planning: Implementation of a cluster randomized staff intervention in dementia care

ObjectiveIncreasing staff engagement level of shared decision-making in advance care planning for persons with dementia in nursing homes. Perceived importance, competence and frequency of staff members applying shared decision-making were measured. Additionally, facilitators and barriers in the implementation process were described.MethodsIn this pretest-posttest cluster randomized trial, 311 staff members from 65 Belgian nursing home wards participated. Key components of the intervention were knowledge on shared decision-making, role-play exercises and internal policies on advance care planning. Audio recordings of advance care planning conversations between residents, families and staff were compared before and after the intervention. Participants filled in questionnaires and provided feedback.ResultsWards demonstrated a higher level of shared decision-making after the intervention (p < 0.001) while time spent on the conversations did not increase. This effect persisted at 6 months follow-up (p < 0.001). Participants perceived shared decision-making as more important (p = 0.031) and felt more competent (p = 0.010), though frequency of use did not change (p = 0.201). High staff turnover and difficult co-operation with GP’s were barriers.ConclusionNursing home staff benefits from this training in shared decision-making.Practice implicationsLearning shared decision-making in advance care planning for persons with dementia is possible and sustainable in the time-constricted context of nursing homes.     

Persuasive communication in medical decision-making during consultations with patients with limited health literacy in hospital-based palliative care

ObjectiveBoth patients in the palliative phase of their disease and patients with limited health literacy (LHL) have an increased risk of being influenced by healthcare providers (HCPs) when making decisions. This study aims to explore to what extent persuasive communication occurs during shared decision-making (SDM) by (1) providing an overview of persuasive communication behaviours relevant for medical decision-making and (2) exemplifying these using real-life outpatient consultations.MethodsAn exploratory qualitative design was applied: (1) brief literature review; (2) analysis of verbatim extracts from outpatient consultations and stimulated recall sessions with HCPs; and (3) stakeholder meetings.Results24 different persuasive communication behaviours were identified, which can be divided in seven categories: biased presentation of information, authoritative framing, probability framing, illusion of decisional control, normative framing, making assumptions and using emotions or feelings.ConclusionsPersuasive communication is multi-faceted in outpatient consultations. Although undesirable, it may prove useful in specific situations making it necessary to study the phenomenon more in depth and deepen our understanding of its mechanisms and impact.Practice implicationsAwareness among HCPs about the use of persuasive communication needs to be created through training and education. Also, HCPs need help in providing balanced information.     

A scoping review of interventions to promote the adoption of shared decision-making (SDM) among health care professionals in clinical practice

ObjectivesTo identify and summarize evidence on interventions to promote the adoption of shared decision-making (SDM) among health care professionals (HCPs) in clinical practice.MethodsElectronic databases including: MEDLINE, EMBASE, CINAHL, PsycINFO and Cochrane library were searched to determine eligible peer-reviewed articles. Grey literature was searched for additional interventions. Eligibility screening and data extraction were independently completed. Results are presented as written evidence summaries and tables.ResultsOur search yielded 238 articles that met our inclusion criteria. Interventions mostly targeted physicians (46%), had multiple educational modalities (46%), and were administered in group settings (44%) before the clinical encounter (71%). Very few were developed based on the learning needs of targeted HCPs (24%). Many of the SDM outcome tools used for evaluation were developed for the respective study and lacked evidence of validity and reliability (30%).ConclusionWe identified a sizable number of interventions to promote the adoption of SDM, however, these interventions were heterogeneous in their assessments for effectiveness and implementation. Therefore, it is a challenge to infer which strategies and practices are best to promote SDM adoption.Practice implicationsThe need for evidence-based standards for developing SDM interventions targeting HCPs and assessing acceptability, effectiveness and implementation is suggested.     

Eliciting patient preferences in shared decision-making (SDM): Comparing conversation analysis and SDM measurements

ObjectiveTo explore how physicians bring up patient preferences, and how it aligns with assessments of shared decision-making.MethodsQualitative conversation analysis of physicians formulating hypotheses about the patient’s treatment preference was compared with quantitative scores on SDM and ‘patient preferences’ using OPTION(5) and MAPPIN’SDM.ResultsPhysicians occasionally formulate hypotheses about patients’ preferences and then present a treatment option on the basis of that (“if you think X + we can do Y”). This practice may promote SDM in that the decisions are treated as contingent on patient preferences. However, the way these hypotheses are formulated, simultaneously constrains the patient’s freedom of choice and exerts a pressure to accept the physician’s recommendation. These opposing effects may in part explain cases where different assessment instruments yield large variations in SDM measures.ConclusionEliciting patient preferences is a complex phenomenon that can be difficult to reduce into an accurate number. Detailed analysis can shed light on how patient preferences are elicited, and its consequences for patient involvement. Comparing CA and SDM measurements can contribute to specifying communicative actions that SDM scores are based on.Practice implicationsOur findings have implications for SDM communication skills training and further development of SDM measurements.     

Shared decision-making – transferring research into practice: The Analytic Hierarchy Process (AHP)

ObjectiveTo illustrate how the Analytic Hierarchy Process (AHP) can be used to promote shared decision-making and enhance clinician–patient communication.MethodsTutorial review.ResultsThe AHP promotes shared decision-making by creating a framework that is used to define the decision, summarize the information available, prioritize information needs, elicit preferences and values, and foster meaningful communication among decision stakeholders.ConclusionsThe AHP and related multi-criteria methods have the potential for improving the quality of clinical decisions and overcoming current barriers to implementing shared decision-making in busy clinical settings. Further research is needed to determine the best way to implement these tools and to determine their effectiveness.Practice implicationsMany clinical decisions involve preference-based trade-offs between competing risks and benefits. The AHP is a well-developed method that provides a practical approach for improving patient–provider communication, clinical decision-making, and the quality of patient care in these situations.     

Promoting patients' rights at the end of life in a geriatric setting in France: The healthcare professionals’ level of knowledge about surrogate decision-makers and advance directives

ObjectiveTo assess levels of knowledge about patients’ rights, surrogate decision-makers, and advance directives among healthcare professionals at three hospitals in France.MethodsA multicenter, cross-sectional study in three geriatric hospitals in the Paris area (France) in 2015. The participants’ level of knowledge was assessed via an 18-item self-questionnaire on surrogate decision-makers, advance directives, and end-of-life decision-making. The characteristics associated with a good level of knowledge were assessed using logistic regression.ResultsAmong the 301 healthcare professionals (median ± standard deviation age: 40.4 ± 10.2 years; women: 73.4 %), only 15.0 % (95 % confidence interval (CI): [19.7–29.5]) correctly answered at least 75 % of the questions on patients’ rights. Respectively 24.6 % [19.7–29.5], 36.5 % [31.1–42.0] and 37.5 % [32.0–43.0] had sufficient knowledge regarding “surrogate decision-maker”, “advance directives”, and “decision-making at the end of life”. In a multivariable analysis, the only factor significantly associated with a good level of knowledge about end-of-life policy was employment in a university hospital, with a non-significant trend for status as a physician.ConclusionsOur survey of staff working in geriatric care units highlighted the poor overall level of knowledge about healthcare surrogates and advance directives; the results suggest that additional training in these concepts is required.Practice implicationsContinuing education of healthcare professionals on advance directives and surrogate decision-maker should be promoted to ensure rights of elderly patients at the end of life.     

Patient involvement in micro-decisions in intensive care

ObjectiveThe objective of this study was to explore how bedside micro-decisions were made between conscious patients on mechanical ventilation in intensive care and their healthcare providers.MethodsUsing video recordings to collect data, we explored micro-decisions between 10 mechanically ventilated patients and 60 providers in interactions at the bedside. We first identified the types of micro-decisions before using an interpretative approach to analyze the decision-making processes and create prominent themes.ResultsWe identified six types of bedside micro-decisions; non-invited, substituted, guided, invited, shared and self-determined decisions. Three themes were identified in the decision-making processes: 1) being an observer versus a participant in treatment and care, 2) negotiating decisions about individualized care (such as tracheal suctioning or medication),and 3) balancing empowering activities with the need for energy restoration.ConclusionThis study revealed that bedside decision-making processes in intensive care were characterized by a high degree of variability between and within patients. Communication barriers influenced patients’ ability to express their preferences. An increased understanding of how micro-decisions occur with non-vocal patients is needed to strengthen patient participation.Practice ImplicationsWe advise providers to make an effort to solicit patients’ preferences when caring for critically ill patients.     

Engaging patients and families in communication across transitions of care: An integrative review

ObjectiveTo determine the current evidence about patient and family engagement in communication with health professionals during transitions of care to, within and from acute care settings.MethodsAn integrative review using seven international databases was conducted for 2003–2017. Forty eligible studies were analysed and synthesised using framework synthesis.ResultsFour themes: 1) Partnering in care: patients and families should be partners in decision-making and care; 2) Augmenting communication during transitions: intrinsic and extrinsic factors supported transition communication between patients, families and health professionals; 3) Impeding information exchange: the difficulties faced by patients and families taking an active role in transition; and 4) Outcomes of communication during transitions: reported experiences for patients, families and health professionals.ConclusionWhile attitudes towards engaging patients and family in transition communication in acute settings are generally positive, current practices are variable. Structural supports for practice are not always present.Practice implicationsOrganisational strategies to improve communication must incorporate an understanding of patient needs. A structured approach which considers timing, privacy, location and appropriateness for patients and families is needed. Communication training is required for patients, families and health professionals. Health professionals must respect a patient’s right to be informed by regularly communicating.     

Communicating about HPV in the context of head and neck cancer: A systematic review of quantitative studies

ObjectiveRising incidence of HPV-positive head and neck cancers (HPV-HNC) means HPVinfection is increasingly relevant to patient-provider consultations. We performed a systematic review to examine, in the context of patient-provider HNC consultations: discussions about HPV, attitudes towards discussing HPV and information needs.MethodsWe searched Embase, PsychINFO, and CINAHL + for studies to August 2018. Eligible studies included: HNC healthcare professionals (HCPs) and/or HNC patients investigated HNC patient-provider communication about HPV.ResultsTen studies were identified: six including HCPs and four including HNC patients. HCPs varied in confidence in HPV discussions, which was related to their HPV knowledge. Both HCPs and patients acknowledged the need for reliable HPV information. Factors which facilitated HPV discussions included accessible HPV information for patients and HCPs and good HPV knowledge among HCPs. Barriers included the perception, among HCPs, that HPV was a challenging topic to discuss with patients.ConclusionsInformation deficits, communication challenges and barriers to discussing HPV were identified in HNC patient-provider consultations.Practice implicationsAppropriate HPV information is needed for HCPs and patients. Professional development initiatives which increase HCPs’ HPV knowledge and build their communication skills would be valuable.     

Older patients’ attitudes towards and experiences of patient-physician end-of-life communication: a secondary analysis of interviews from British,Dutch and Belgian patients

Background

Older patients often experience sub-standard communication in the palliative phase of illness. Due to the importance of good communication in patient-centred end-of-life care, it is essential to understand the factors which influence older patients’ communication with physicians. This study examines older patients’ attitudes towards, and experiences of, patient-physician end-of-life (EoL) communication in three European countries.

Methods

A secondary analysis of interviews from British, Dutch and Belgian patients over the age of 60 with a progressive terminal illness was conducted. Cross-cutting themes were identified using a thematic approach.

Results

Themes from 30 interviews (Male n?=?20, Median age 78.5) included: confidence and trust; disclosure and awareness; and participation in decision-making. Confidence and trust were reinforced by physicians’ availability, time and genuine attention and hindered by misdiagnoses and poor communication style. Most participants preferred full disclosure, though some remained deliberately ill-informed to avoid distress. Patients expressed a variety of preferences for and experiences of involvement in medical EoL decision-making and a few complained that information was only provided about the physician's preferred treatment.

Conclusions

A variety of experiences and attitudes regarding disclosure and participation in decision-making were reported from each country, suggesting that communication preferences are highly individual. It is important that physicians are sensitive to this diversity and avoid stereotyping. In regard to communication style, physicians are advised to provide clear explanations, avoid jargon, and continually check understanding. Both the ‘informed’ and the ‘shared’ patient-physician decision-making models assume patients make rational choices based on a clear understanding of treatment options. This idealized situation was often not reflected in patients’ experiences.

     

Impact of returning unsolicited genomic results to nongenetic health care providers in the eMERGE III Network

PurposeAs genomic sequencing becomes more common, medically actionable secondary findings will increasingly be returned to health care providers (HCPs), who will be faced with managing the resulting patient care. These findings are generally unsolicited, ie, unrelated to the sequencing indication and/or ordered by another clinician.MethodsTo understand the impact of receiving unsolicited results, we interviewed HCPs who received genomic results for patients enrolled in the Electronic Medical Records and Genomics (eMERGE) Phase III Network, which returned results on >100 actionable genes to eMERGE participants and HCPs.ResultsIn total, 16 HCPs across 3 eMERGE sites were interviewed about their experience of receiving a positive (likely pathogenic or pathogenic), negative, or variant of uncertain significance result for a patient enrolled in eMERGE Phase III and about managing their patient on the basis of the result. Although unsolicited, HCPs felt responsible for managing the patient’s resulting medical care. HCPs indicated that clinical utility depended on the actionability of results, and whereas comfort levels varied, confidence was improved by the availability of subspecialist consults. HCPs were concerned about patient anxiety, insurability, and missing an actionable result in the electronic health record.ConclusionOur findings help inform best practices for return of unsolicited genomic screening findings in the future.