Patients’ perceptions of palliative care: adaptation of the Quality from the Patient’s Perspective instrument for use in palliative care,and description of patients’ perceptions of care received

Background

Globally, the number of people who die with dementia is increasing. The importance of a palliative approach in the care of people with dementia is recognised and there are national polices to enhance current care. In the UK implementation of these polices is promoted by the National Institute for Health and Care Excellence (NICE) Dementia Quality Standards (QS). Since publication of the QS new care interventions have been developed.

Aim

To explore critically the current international research evidence on effect available to inform NICE Dementia QS relevant to end of life (EOL) care.

Design

We used systematic review methods to seek the research evidence for three statements within the Dementia QS. These are those that recommend: (1) a case management approach, (2) discussing and consideration of making a statement about future care (SFC) and (3) a palliative care assessment (PCA). We included evaluative studies of relevant interventions that used a comparative design, such as trials and cohort studies, and measured EOL care outcomes for persons dying with moderate to severe dementia. Our primary outcome of interest was whether the intervention led to a measurable impact on wellbeing for the person with dementia and their family. We assessed included studies for quality using a scale by Higginson and colleagues (2002) for assessment of quality of studies in palliative care, and two authors undertook key review processes. Data sources included Cinahl, Embase, and PsychINFO from 2001 to August 2014. Our search strategy included free text and medical subject headings relevant to population and recommended care.

Results

We found seven studies evaluating a care intervention; four assessed SFC, three PCA. None assessed case management. Studies were of weak design; all used retrospective data and relied on others for precise record keeping and for accurate recall of events. There was limited overlap in outcome measurements. Overall reported benefits were mixed.

Conclusions

Quality statements relevant to EOL care are useful to advance practice however they have a limited evidence base. High quality empirical work is needed to establish that the recommendations in these statements are best practice.

     

The relationships between the combination of person- and organization-related conditions and patients’ perceptions of palliative care quality

Background

Little is known about the combination of person- and organization- related conditions and the relationships with patients’ perspectives of care quality. Such a combination could contribute knowledge reflecting the complexity of clinical practice, and enhance individualized care. The aim was to investigate the relationships between the combination of person- and organization-related conditions and patients’ perceptions of palliative care quality.

Methods

A cross-sectional study, including 191 patients in the late palliative phase (73% response rate) admitted to hospice inpatient care (n =?72), hospice day care (n =?51), palliative units in nursing homes (n =?30) and home care (n =?38), was conducted between November 2013 and December 2014, using the instrument Quality from the Patients’ Perspective specific to palliative care (QPP-PC). Data were analysed, using analysis of covariance, to explore the amount of the variance in the dependent variables (QPP-PC) that could be explained by combination of the independent variables – Person- and organization-related conditions, ? while controlling for differences in covariates.

Results

Patients scored the care received and the subjective importance as moderate to high. The combination of person- and organization - related conditions revealed that patients with a high sense of coherence, lower age (person – related conditions) and being in a ward with access to and availability of physicians (organization-related condition) might be associated with significantly higher scores for the quality of care received. Gender (women), daily contact with family and friends, and low health-related quality of life (person-related conditions) might be associated with higher scores for subjective importance of the aspects of care quality.

Conclusion

Healthcare personnel, leaders and policy makers need to pay attention to person- and organization-related conditions in order to provide person-centered palliative care of high quality. Further studies from palliative care contexts are needed to confirm the findings and to investigate additional organizational factors that might influence patients’ perceptions of care quality.

     

A video-based situational judgement test of medical students’ communication competence in patient encounters: Development and first evaluation

ObjectiveWe developed and evaluated the Video-Based Assessment of Medical Communication Competence (VA-MeCo), a construct-driven situational judgement test measuring medical students’ communication competence in patient encounters.MethodsIn the construction phase, we conducted two expert studies (n_panel1 = 6, n_panel2 = 13) to ensure curricular and content validity and sufficient expert agreement on the answer key. In the evaluation phase, we conducted a cognitive pre-test (n = 12) and a pilot study (n = 117) with medical students to evaluate test usability and acceptance, item statistics and test reliability depending on the applied scoring method (raw consensus vs. pairwise comparison scoring).ResultsThe results of the expert interviews indicated good curricular and content validity. Expert agreement on the answer key was high (ICCs> .86). The pilot study showed favourable usability and acceptance by students. Irrespective of the scoring method, reliability for the complete test (Cronbach’s α >.93) and its subscales (α >.83) was high.ConclusionThere is promising evidence that medical communication competence can be validly and reliably measured using a construct-driven and video-based situational judgement test.Practice ImplicationsVideo-based SJTs allow efficient online assessment of medical communication competence and are well accepted by students and educators.     

Paediatric palliative care: development and pilot study of a ‘Directory’ of life-limiting conditions

Background

Children’s palliative care services are developing. Rational service development requires sound epidemiological data that are difficult to obtain owing to ambiguity in the definitions both of the population who needs palliative care and of palliative care itself. Existing definitions are of trajectory archetypes. The aim of this study was to develop and pilot a directory of the commonest specific diagnoses that map on to those archetypes.

Methods

The diagnoses of patients under the care of five children hospices and a tertiary specialist palliative medicine service in the UK were recorded. Duplicates and diagnoses that were not life-limiting conditions according to the ACT/RCPCH criteria or were not primary were removed. The resulting Directory of life-limiting conditions was piloted by analysing Death Certificate data of children in Wales between 2002 and 2007.

Results

1590 diagnoses from children’s hospices and 105 from specialist palliative medicine were combined. After removals there were 376 diagnostic label. All ICD10 chapter headings were represented by at least one condition. The pilot study showed that 569 (54%) deaths in Wales were caused by LLC. Only four LLC resulted in ten or more deaths. Among deaths from LLC, the ten commonest diagnoses accounted for 32%, while the 136 diagnoses that caused one or two deaths accounted for 25%. The majority occurred from a small number of life-limiting conditions.

Conclusion

The Directory is a practical tool for identifying most life-limiting conditions using ICD10 codes that facilitates extraction and analysis of data from existing sources in respect of life-limiting conditions in children such as death certificate data, offering the potential for rapid and precise studies in paediatric palliative care.

     

Wanted: role models - medical students’ perceptions of professionalism

Background

Transformation of medical students to become medical professionals is a core competency required for physicians in the 21^st century. Role modeling was traditionally the key method of transmitting this skill. Medical schools are developing medical curricula which are explicit in ensuring students develop the professional competency and understand the values and attributes of this role. The purpose of this study was to determine student perception of professionalism at the University of Ottawa and gain insights for improvement in promotion of professionalism in undergraduate medical education.

Methods

Survey on student perception of professionalism in general, the curriculum and learning environment at the University of Ottawa, and the perception of student behaviors, was developed by faculty and students and sent electronically to all University of Ottawa medical students. The survey included both quantitative items including an adapted Pritzker list and qualitative responses to eight open ended questions on professionalism at the Faculty of Medicine, University of Ottawa. All analyses were performed using SAS version 9.1 (SAS Institute Inc. Cary, NC, USA). Chi-square and Fischer’s exact test (for cell count less than 5) were used to derive p-values for categorical variables by level of student learning.

Results

The response rate was 45.6% (255 of 559 students) for all four years of the curriculum. 63% of the responses were from students in years 1 and 2 (preclerkship). Students identified role modeling as the single most important aspect of professionalism. The strongest curricular recommendations included faculty-led case scenario sessions, enhancing interprofessional interactions and the creation of special awards to staff and students to “celebrate” professionalism. Current evaluation systems were considered least effective. The importance of role modeling and information on how to report lapses and breaches was highlighted in the answers to the open ended questions.

Conclusions

Students identify the need for strong positive role models in their learning environment, and for effective evaluation of the professionalism of students and teachers. Medical school leaders must facilitate development of these components within the MD education and faculty development programs as well as in clinical milieus where student learning occurs.

     

Touch in primary care consultations: qualitative investigation of doctors’ and patients’ perceptions

Background

Good communication skills are integral to successful doctor–patient relationships. Communication may be verbal or non-verbal, and touch is a significant component, which has received little attention in the primary care literature. Touch may be procedural (part of a clinical task) or expressive (contact unrelated to a procedure/examination).

Aim

To explore GPs’ and patients’ experiences of using touch in consultations.

Design and setting

Qualitative study in urban and semi-rural areas of north-west England.

Method

Participating GPs recruited registered patients with whom they felt they had an ongoing relationship. Data were collected by semi-structured interviews and subjected to constant comparative qualitative analysis.

Results

All participants described the importance of verbal and non-verbal communication in developing relationships. Expressive touch was suggested to improve communication quality by most GPs and all patients. GPs reported a lower threshold for using touch with older patients or those who were bereaved, and with patients of the same sex as themselves. All patient responders felt touch on the hand or forearm was appropriate. GPs described limits to using touch, with some responders rarely using anything other than procedural touch. In contrast, most patient responders believed expressive touch was acceptable, especially in situations of distress. All GP responders feared misinterpretation in their use of touch, but patients were keen that these concerns should not prevent doctors using expressive touch in consultations.

Conclusion

Expressive touch improves interactions between GPs and patients. Increased educational emphasis on the conscious use of expressive touch would enhance clinical communication and, hence, perhaps patient wellbeing and care.     

Novel use of an OSCE to assess medical students’ responses to a request for a low value diagnostic imaging test: A mixed methods analysis

ObjectiveEvaluate medical students’ communication skills with a standardized patient (SP) requesting a low value test and describe challenges students identify in addressing the request.MethodsIn this mixed-methods study, third-year students from two medical schools obtained a history, performed a physical examination, and counseled an SP presenting with uncomplicated low back pain who requests an MRI which is not indicated. SP raters evaluated student communication skills using a 14-item checklist. Post-encounter, students reported whether they ordered an MRI and challenges faced.ResultsStudents who discussed practice guidelines and risks of unnecessary testing with the SP were less likely to order an MRI. Students cited several challenges in responding to the SP request including patient characteristics and circumstances, lack of knowledge about MRI indications and alternatives, and lack of communication skills to address the patient request.ConclusionsMost students did not order an MRI for uncomplicated LBP, but only a small number of students educated the patient about the evidence to avoid unnecessary imaging or the harm of unnecessary testing.Practice implicationsKnowledge about unnecessary imaging in uncomplicated LBP may be insufficient to adhere to best practices and longitudinal training in challenging conversations is needed.     

A longitudinal study of third-year medical students’ communication competence,communication anxiety,and attitudes toward patient-centered care

ObjectiveWe investigated changes in medical students’ communication competence and communication anxiety during their third year of training when they are immersed in formative clinical experiences that shape their patient-centered care and communication skills.MethodsWe invited 282 students to complete a longitudinal, four-phase online survey during their third-year. Our response rate was 62.8% at Phase I (n = 177), 34.0% at Phase II (n = 96), 37.9% at Phase III (n = 107), and 48.9% at Phase IV (n = 138). Measures included communication competence, communication anxiety, and patient-centered attitudes and orientation. We employed hierarchical linear modeling to analyze the data.ResultsStudents’ communication competence and anxiety improved over time. Female students reported greater communication anxiety and less competence related to information giving. At each phase, patient-centered attitudes significantly predicted communication competence and communication anxiety.ConclusionStudents’ competence and anxiety regarding communication during medical encounters improve during their third year and are significantly influenced by their attitudes and orientation towards patient-centered care and communication.Practice implicationsSchools should integrate curriculum that fosters positive attitudes toward patient-centered communication and provides opportunities to practice complex communication skills, which may increase competence and recognition that patient-centered communication is an important clinical skill.     

The role of weight bias and role-modeling in medical students’ patient-centered communication with higher weight standardized patients

ObjectivePatients with obesity may experience less patient-centered care. We assessed whether medical students’ implicit/explicit weight-related attitudes and perceptions of normative attitudes are associated with patient-centered care for patients with obesity.MethodsThird and fourth year medical students (N = 111) at one medical school completed a survey and participated in a patient care scenario with a standardized patient with obesity. Encounters were coded for patient-centered behavior. Predictors of patient-centered behaviors were assessed.ResultsStudent perceptions that negative attitudes about patients with obesity are normative in medical school were significantly associated with poorer patient-centered behaviors, including lower attentiveness (b=?0.19, p = 0.01), friendliness (b=?0.28, p < 0.001), responsiveness (b=?0.21, p = 0.002), respectfulness (b=?0.17, p = 0.003), interactivity (b=?0.22, p = 0.003), likelihood of being recommended by observers (b=?0.34, p < 0.001), and patient-centeredness index scores (b=?0.16, p = 0.002). Student reported faculty role-modeling of discrimination against patients with obesity predicted lower friendliness (b=?0.16, p = 0.03), recommendation likelihood (b=?0.22, p = 0.04), and patient-centeredness index score (b=?0.12, p = 0.03).ConclusionsNegative normative attitudes and behaviors regarding obesity in the medical school environment may adversely influence the quality of patient-centered behaviors provided to patients with obesity.Practice implicationsEfforts to improve patient-centered communication quality among medical trainees may benefit from intervention to improve group normative attitudes about patients with obesity.     

Health professionals’ view on the role of hope and communication challenges with patients in palliative care: A systematic narrative review

ObjectiveTo identify health professionals' (HPs) perspectives on the role of hope and the main challenges faced when communicating with patients in palliative care (PC).MethodsSearch on PubMed, Scopus, SocIndex, Cochrane, and Web of Science using: palliat*, palliative care, palliative medicine, hospice care, terminal care, long term care, supportive care, end of life (EOL) care and hope*, followed by a thematic narrative analysis.ResultsThirty-five studies were included. HPs' views were grouped in: Bringing out hope and Taking down hope. HPs believe that hope is elicited through a personal patient-provider bond and exhibited through medical treatment delivery. HPs face difficulties when delivering prognosis, referring to hospice, and providing palliation.ConclusionHope is conveyed through verbal and non-verbal communication. HPs struggle to account for hope's shifting character, challenging the engagement in EOL discussions.Practical implicationsFindings show a patient-provider clash of perspectives, suggesting a gap in acknowledging the shifting nature of hope. An important question emerges: Are the existing theories of hope that are solely explained from a patient experience relevant for HPs' own interpretation? Investigating the HPs' attitudes gathered in collective experiences in PC, might contribute to answering the question in the context of building more constructive communication approaches.     

Learning to be a doctor: Medical students’ perception of their roles in longitudinal outpatient clerkships

Objective

To understand how medical students perceive their roles in early longitudinal primary care clerkships.

Predictors of natural mentoring relationships and students’ adjustment to college

Little research exists that examines natural mentoring relationships (NMRs) during the college transition. We examine the role of parental attachment and help-seeking behaviors in students’ development of new NMRs and the role NMRs have on students’ outcomes. Included in the study were 215 first-year students at a large, urban, private university. Participants completed surveys at the beginning (Time 1) and at the end (Time 2) of the school year. We used structural equation modeling to test a hypothesized model that included predictors (i.e., attachment to parents and help-seeking behaviors) of NMRs and social and academic adjustment in college. Findings show a path relationship connecting the attachment to parents to help-seeking behaviors, and then to the number of reported NMRs. Help-seeking behaviors mediated the association between attachment and NMRs. The number of NMRs is associated with higher social adjustment, but not academic adjustment by the end of students’ first year of college. Based on these results, we discuss the theoretical implications of newly formed NMRs and provide guidance for institutional interventions targeting first-year college students to assist with transition challenges.     

The legacy of Tuskegee and trust in medical care: is Tuskegee responsible for race differences in mistrust of medical care?

OBJECTIVES: To examine race differences in knowledge of the Tuskegee study and the relationship between knowledge of the Tuskegee study and medical system mistrust. METHODS: We conducted a telephone survey of 277 African-American and 101 white adults 18-93 years of age in Baltimore, MD. Participants responded to questions regarding mistrust of medical care, including a series of questions regarding the Tuskegee Study of Untreated Syphilis in the Negro Male (Tuskegee study). RESULTS: Findings show no differences by race in knowledge of or about the Tuskegee study and that knowledge of the study was not a predictor of trust of medical care. However, we find significant race differences in medical care mistrust. CONCLUSIONS: Our results cast doubt on the proposition that the widely documented race difference in mistrust of medical care results from the Tuskegee study. Rather, race differences in mistrust likely stem from broader historical and personal experiences.     

Parents’ attitudes towards and perceptions of involving minors in medical research from the Japanese perspective

Background

Children’s intentions should be respected. Parents are the key persons involved in decision-making related to their children. In Japan, the appropriate ages and standards for a child’s consent and assent, approval, and decision-making are not clearly defined, which makes the process of obtaining consent and assent for clinical research complex. The purpose of this paper is as follows: to understand the attitudes and motives of parents concerning children’s participation in medical research and the factors influencing their decision-making. We also sought to clarify who has the right to be involved in decisions regarding children’s participation in research.

Methods

A semi-structured Internet survey on parents’ opinions and attitudes and preferences concerning medical research involvement was conducted. Children were divided into three age groups (6–10-year-olds, 11–14-year-olds, and 15–18-year-olds), with three illness severity categories. Possible correlations between the number of children, children’s ages, parents’ educational levels, and parents’ attitudes were examined.

Results

Among the participants, 42.3% recognized the term “informed consent.” The proportion of participants who understood “informed consent” increased with educational level. Four out of five participants did not know, or had not heard of, the term “informed assent.” Furthermore, the percentage of those who understood the term “informed assent” increased with academic level. Participants generally believed in prioritizing parents’ opinions over children’s, and that parents and children would ideally reach a joint decision. Although many parents favored collaborative decision-making, they also wanted their own will reflected in the decision and felt they should receive important information before their children do. Decision-making was affected by the condition’s severity and prognosis. This indicates that most Japanese parents believe that their children have the right to know their disease name and treatment; nonetheless, they should be protected. Parents’ values and judgments regarding medical intervention involving their children varied.

Conclusions

Children’s ability to consent to treatment and research believed to be in their best interests should be assessed appropriately. They should be permitted to provide consent or assent, and their views should be respected. Involving children in decision-making fosters more open communication and transparency between medical professionals, parents, and children.