Communication and patient involvement in decision making : examples from consultations on atrial fibrillation

Background: Further knowledge is needed regarding communication that occurs in practice between patients with atrial fibrillation (AF) and health professionals in consultations to understand the issue of patient involvement in treatment decisions. Overall aim: The overall aim of this thesis is to contribute knowledge on communication between patients and health professionals (cardiology nurses and cardiologists), focussing on how they create involvement in decision making in consultations. Specific aims: (1) To describe (i) the topics that patients with AF discuss with cardiology nurses and cardiologists; (ii) the use of discursive space in consultations between these participants; and (iii) the frequency at which patients, cardiology nurses, and cardiologists introduce identified topics. (2) To describe the different types of resistance by patients to treatment with warfarin and how cardiologists respond to such resistance. (3) To examine how patients describe involvement and communication in decision making regarding treatment in consultations with cardiology nurses and cardiologists. (4) To examine how cardiologists describe their views on patient involvement in AF treatment decisions, their perceptions regarding efforts to involve patients, and how they handle decisions. Methods: A qualitative design was used. In study I, the sample consisted of 23 videotaped consultations between patients with AF and cardiology nurses and cardiologists at six nurse-led cardiology outpatient clinics. Content analysis was used to obtain a description of topics that were discussed. The patterns of dominance for the various topics and participants were examined. In study II, the sample consisted of 11 videotaped consultations between patients with AF and cardiologists. Conversation analysis was used to describe interactions concerning resistance to treatment with warfarin. In study III, 22 patients with AF were interviewed directly after their consultations with cardiology nurses and cardiologists. Content analysis was used for the resulting data. In study IV, 10 cardiologists were interviewed in cardiology clinics at four Swedish hospitals and qualitative content analysis was used. Findings: In study I, a medically driven agenda dominated the patient-driven agenda. However, when the patients initiated conversations about their life with AF (the topic that received the least amount of space on the agenda), involvement was created. In study II, the patients’ resistance could be viewed as a source of knowledge about patients’ real-life situations and what motivates them. In study III, despite not being actively involved in the decision-making process, the patients experienced a sense of involvement when they felt understood and were listened to. In study IV, by taking into account the patients’ feelings in the consultations, and by actively encouraging the patients to be involved, the cardiologists contributed to patient involvement. Conclusions: Patients, cardiology nurses, and cardiologists create involvement in decision making in consultations as communicative projects. Patients strive for space and create involvement by showing resistance to the decisions suggested by health professionals. However, involvement is not only an issue about obtaining space in the consultations, but is also associated with obtaining clarification, building confidence, feeling understood, trusting cardiology nurses and cardiologists, and having confidence in receiving consistent care within an established relationship. On a theoretical level, this thesis sheds light on the interaction between the concepts of communication, involvement, and decision making

Communicative constructions of person-centred and non-person-centred caring in nurse-led consultations

Purpose Nursing is theorised to be a component of person-centred care. Communicative constructions of person-centred caring are a topic that needs to be studied in consultations. The study aimed to explore how person-centred caring and non-person- centred caring are verbally constructed in consultations between patients and nurse. Method This study was qualitative using audio-recorded observations from consultations with advanced nurse practitioners in nurse-led chemotherapy clinics from four hospitals in the UK through purposive sampling. Discourse analysis was used to identify communicative patterns in 45 non-participant observations of nurse consultations. Results The dominant discourse was a non-person-centred oriented discourse framed by the biomedical model. It was also possible to identify fragments of an alternative discourse—a person-oriented discourse localising health problems within the patient's personal and sociocultural context. Conclusions The prominent use of a non-person-oriented discourse focusing on the medical/technical aspects of a patient's assessment/evaluation in consultations may make it difficult for patients to raise questions and concerns from their daily lives during consultations. However, fragments of a person-oriented discourse show that it is possible for nurses to allow a person-centred approach to the consultation. The pedagogical implications have to do with raising nurses' awareness of the role of evaluative language in enhancing person-centred communication with patients in clinical interactions

Interactional resistance between patients with atrial fibrillation and cardiologists in consultation on treatment with warfarin: the value of shared decision-making

Rationale: Atrial fibrillation (AF) increases the risk of stroke and it can be reduced by treatment with warfarin. Some patients consider that warfarin is a stressful treatment with undesired effects and the perceived barriers include unwillingness to take it. Knowledge of patients resisting warfarin treatment may be useful for the potential threat to maintaining shared decision-making in the consultation as a central tenet of person-centered medicine. Aims and objectives: To identify how patients resist treatment with warfarin and how cardiologists respond to patients’ resistance. The co-constructive perspective of this work analyses the consultations by emphasizing the clinical communication strategies of both patients and cardiologists. Method: Eleven videotaped consultations, in 4 different hospitals, were selected for analysis. Treatment interactions regarding warfarin between patients with AF and cardiologists were analysed, according to the methodology of conversation analysis. Results: There were 4 types of resistance from patients for accepting treatment with warfarin. These included “Giving reasons for their resistance”, “Suggestion of another treatment option by the patient”, “Stating a treatment preference” and “Questioning or challenging the cardiologist’s treatment recommendation”. The cardiologists’ responses to the patients’ resistance included “Repeating the treatment recommendation”, “Negotiation with the patient”, “Providing additional information on the recommended treatment” and “Extending the explanation for the purpose of taking the treatment”. Conclusions: By showing resistance, patients are thought to want to participate in their treatment decisions and an awareness of patients’ resistance to treatment enables cardiologists to address the patients’ experience-based views on their treatment and individual concerns as part of clinical strategies to increase the person-centeredness of medical intervention

Communication patterns in nurse-led chemotherapy clinics:A mixed-method study

Objective: To determine patterns of nurse-patient communication in fulfilling patients’ informational/psychosocial needs, effects of longer consultation/operational aspects on person-centred care experiences. Methods: Mixed-method design; secondary analysis of transcripts of nurse-patient communication within nurse-led chemotherapy clinics in UK [3]. Purposive sampling (13 nurses); non-participant observations (61 consultations). Qualitative content analysis of audio-recorded transcripts. Quantitative analysis using the Medical Interview Aural Rating Scale [14] to compare mean differences in the number of cues and level of responding using one-way ANOVA, and correlational analyses of discursive spaces. Results: Nurses responded positively to informational cues, but not psychosocial cues. Longer consultations associated with more informational and psychosocial cues (p < .0001), but not nurses’ cue-responding behaviours. Four main themes emerged: challenges/opportunities for person-centred communication in biomedical contexts; patients’ “life world” versus the “medical world”; three-way communication: nurse, patient and family; implications of continuity of care. Conclusions: The challenges/opportunities for cue-responding in nurse-led chemotherapy clinics were evident for informational and psychosocial support of patients. Shifting from a biomedical to biopsychosocial focus is difficult. Practice implications: Further evaluation is needed to integrate biopsychosocial elements into communication education/training. Careful planning is required to ensure continuity and effective use of time for person-centred care

Integrated palliative care in the Spanish context: a systematic review of the literature

Abstract Background: Integrated palliative care (IPC) involves bringing together administrative, organisational, clinical and service aspects in order to achieve continuity of care between all actors involved in the care network of patients receiving palliative care (PC) services. The purpose of this study is to identify literature on IPC in the Spanish context, either in cancer or other advanced chronic diseases. Methods: Systematic review of the literature about IPC published in Spain between 1995 and 2013. Sources searched included PubMed, Cochrane Library, Cinahl, the national palliative care Journal (Medicina Paliativa), and Google. Evidence on IPC in care models, pathways, guidelines and other relevant documents were searched. Additionally, data were included from expert sources. Elements of IPC were considered based on the definition of IPC and the Emmanuel´s IPC tool. The main inclusion criterion was a comprehensive description of PC integration. Results: Out of a total of 2,416 titles screened, 49 were included. We found two models describing IPC interventions achieving continuity and appropriateness of care as a result, 12 guidelines or pathways (most of them with a general approach including cancer and non-cancer and showing a theoretical IPC inclusion as measured by Emmanuel’s tool) and 35 other significant documents as for their context relevance (17 health strategy documents, 14 analytical studies and 4 descriptive documents). These last documents comprised respectively: regional and national plans with an IPC inclusion evidence, studies focused on IPC into primary care and resource utilisation; and descriptions of fruitful collaboration programmes between PC teams and oncology departments. Conclusions: The results show that explications of IPC in the Spanish literature exist, but that there is insufficient evidence of its impact in clinical practice. This review may be of interest for Spanish-speaking countries and for others seeking to know the status of IPC in the literature in their home nations

Integrated palliative care in Europe: a qualitative systematic literature review of empirically-tested models in cancer and chronic disease

Integrated Palliative Care (PC) strategies are often implemented following models, namely standardized designs that provide frameworks for the organization of care for people with a progressive life-threatening illness and/or for their (in)formal caregivers. The aim of this qualitative systematic review is to identify empirically-evaluated models of PC in cancer and chronic disease in Europe. Further, develop a generic framework that will consist of the basis for the design of future models for integrated PC in Europe. Methods: Cochrane, PubMed, EMBASE, CINAHL, AMED, BNI, Web of Science, NHS Evidence. Five journals and references from included studies were hand-searched. Two reviewers screened the search results. Studies with adult patients with advanced cancer/chronic disease from 1995 to 2013 in Europe, in English, French, German, Dutch, Hungarian or Spanish were included. A narrative synthesis was used. Results: 14 studies were included, 7 models for chronic disease, 4 for integrated care in oncology, 2 for both cancer and chronic disease and 2 for end-of-life pathways. The results show a strong agreement on the benefits of the involvement of a PC multidisciplinary team: better symptom control, less caregiver burden, improvement in continuity and coordination of care, fewer admissions, cost effectiveness and patients dying in their preferred place. Conclusion: Based on our findings, a generic framework for integrated PC in cancer and chronic disease is proposed. This framework fosters integration of PC in the disease trajectory concurrently with treatment and identifies the importance of employing a PC-trained multidisciplinary team with a threefold focus: treatment, consulting and training

To what degree is palliative care integrated in guidelines and pathways for adult cancer patients in Europe: a systematic literature review

Palliative Care (PC) aims to improve the quality of life for patients with cancer and their families and its benefits have been demonstrated by several studies. The objective of this systematic review is to assess the integration of PC in the content of guidelines/pathways of adult cancer patients in Europe. Methods We included studies of adult patients with cancer published from 01/01/1995 and 31/12/2013 in Europe in six languages. We searched nine electronic databases, hand-searched six journals and also performed citation tracking. Studies were ranked using Emanuel's Integrated Palliative Care (IPC) criteria, a tool containing 11 domains to assess PC content in guidelines. Two reviewers screened the results and narrative synthesis has been employed. Results We identified a total of 28,277 potentially relevant articles from which 637 were eligible for full-text screening. The final review included 60 guidelines and 14 pathways. Eighty percent (80 %) of the guidelines/pathways emphasize a holistic approach and 66 % focus on PC interventions aimed at reducing suffering. Fifty seven percent (57 %) did not discuss referral criteria for PC. Of all studies, five fulfilled at least 10/11 IPC criteria. Differences existed with regard to the referral criteria for bereavement care and the continuous adjustment of goals of care. Conclusion Overall, most of the identified guidelines/pathways highlighted the importance of the holistic approach of IPC. The studies that were found to fulfil at least 10/11 Emanuel's IPC criteria could serve as benchmarks of IPC

Towards integration of palliative care in patients with chronic heart failure and chronic obstructive pulmonary disease:a systematic literature review of European guidelines and pathways

Despite the positive impact of Palliative Care (PC) on the quality of life for patients and their relatives, the implementation of PC in non-cancer health-care delivery in the EU seems scarcely addressed. The aim of this study is to assess guidelines/pathways for integrated PC in patients with advanced Chronic Heart Failure (CHF) and Chronic Obstructive Pulmonary Disease (COPD) in Europe via a systematic literature review. Methods Search results were screened by two reviewers. Eligible studies of adult patients with CHF or COPD published between 01/01/1995 and 31/12/2013 in Europe in 6 languages were included. Nine electronic databases were searched, 6 journals were hand-searched and citation tracking was also performed. For the analysis, a narrative synthesis was employed. Results The search strategy revealed 26,256 studies without duplicates. From these, 19 studies were included in the review; 17 guidelines and 2 pathways. 18 out of 19 focused on suffering reduction interventions, 13/19 on a holistic approach and 15/19 on discussions of illness prognosis and limitations. The involvement of a PC team was mentioned in 13/19 studies, the assessment of the patients’ goals of care in 12/19 and the advance care planning in 11/19. Only 4/19 studies elaborated on aspects such as grief and bereavement care, 7/19 on treatment in the last hours of life and 8/19 on the continuation of goal adjustment. Conclusion The results illustrate that there is a growing awareness for the importance of integrated PC in patients with advanced CHF or COPD. At the same time, however, they signal the need for the development of standardized strategies so that existing barriers are alleviated

Integration of oncology and palliative care : a Lancet Oncology Commission

Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care