Shared decision‐making in maternity care: Acknowledging and overcoming epistemic defeaters

Shared decision‐making involves health professionals and patients/clients working together to achieve true person‐centred health care. However, this goal is infrequently realized, and most barriers are unknown. Discussion between philosophers, clinicians, and researchers can assist in confronting the epistemic and moral basis of health care, with benefits to all. The aim of this paper is to describe what shared decision‐making is, discuss its necessary conditions, and develop a definition that can be used in practice to support excellence in maternity care. Discussion between the authors, with backgrounds in philosophy, clinical maternity care, health care management, and maternity care research, assisted the team to confront established norms in maternity care and challenge the epistemic and moral basis of decision‐making for caesarean section. The team concluded that shared decision‐making must start in pregnancy and continue throughout labour and birth, with equality in discourse facilitated by the clinician. Clinicians have a duty of care for the adequacy of women's knowledge, which can only be fulfilled when relevant knowledge is offered freely and when personal beliefs and biases that may impinge on decision‐making (defeaters) are disclosed. Informed consent is not shared decision‐making. Key barriers include existing cultural norms of “the doctor knows best” and “patient acquiescence” that prevent defeaters being acknowledged and discussed and can lead to legal challenges, overuse of medical intervention and, in some areas, obstetric violence. Shared decision‐making in maternity care can thus be defined as an enquiry by clinician and expectant woman aimed at deciding upon a course of care or none, which takes the form of a dialogue within which the clinician fulfils their duty of care to the client's knowledge by making available their complete knowledge (based on all types of evidence) and expertise, including an exposition of any relevant and recognized potential defeaters. Research to develop measurement tools is required.     

Reconciling evidence‐based medicine and patient‐centred care: defining evidence‐based inputs to patient‐centred decisions

Evidence‐based and patient‐centred health care movements have each enhanced the discussion of how health care might best be delivered, yet the two have evolved separately and, in some views, remain at odds with each other. No clear model has emerged to enable practitioners to capitalize on the advantages of each so actual practice often becomes, to varying degrees, an undefined mishmash of each. When faced with clinical uncertainty, it becomes easy for practitioners to rely on formulas for care developed explicitly by expert panels, or on the tacit ones developed from experience or habit. Either way, these tendencies towards ‘cookbook’ medicine undermine the view of patients as unique particulars, and diminish what might be considered patient‐centred care. The sequence in which evidence is applied in the care process, however, is critical for developing a model of care that is both evidence based and patient centred. This notion derives from a paradigm for knowledge delivery and patient care developed over decades by Dr. Lawrence Weed. Weed's vision enables us to view evidence‐based and person‐centred medicine as wholly complementary, using computer tools to more fully and reliably exploit the vast body of collective knowledge available to define patients’ uniqueness and identify the options to guide patients. The transparency of the approach to knowledge delivery facilitates meaningful practitioner–patient dialogue in determining the appropriate course of action. Such a model for knowledge delivery and care is essential for integrating evidence‐based and patient‐centred approaches.     

Appreciating the ‘person’ in long‐term care

Background. Internationally, approaches to the long‐term care of older people are changing. New models are being developed that aim to de‐institutionalise care settings, maximise opportunities for older people to participate in decision‐making and move from a predominant medical model of care to one that is community orientated. Aims. The aim of this study is to highlight similarities and differences between the different models that exist and explore the implications of these for the role of the registered nurse in long‐term care. Methods. We chose three models for review as these represent a range of views of person centredness, each having distinct roots and focus. The models chosen were as follows: (i) culture change, (ii) person‐centred practice and (iii) relationship‐centred care. Results. The review highlights two key issues – (i) the distinctiveness of different models and frameworks and (ii) different interpretations of ‘person’. Firstly, we identify a disconnection between espoused differences between models and frameworks and the reality of these differences. The evidence also identifies how some models and frameworks adopt a more inclusive conceptualisation of person and personhood and do not define personhood in relation to role (resident, nurse and family member). Conclusions. There is merit in the development of models and frameworks that try to make explicit the different dimensions of person centredness in long‐term care. However, the focus on the development of these, without sufficient attention being paid to evidence of best practices grounded in the concept of personhood, person‐centred care is in danger of losing its original humanistic emphasis. Further, models and frameworks need to take account of the personhood of all persons. Implications for practice. Registered nurses need to have an understanding of the concept of personhood to make sense of the various person‐centred practice frameworks that exist. Without this understanding, there is a danger that the essence of personhood may be lost in the zeal to implement particular models and frameworks.     

How to make a particular case for person‐centred patient care: A commentary on Alexandra Parvan

In recent years, a person‐centred approach to patient care in cases of mental illness has been promoted as an alternative to a disease orientated approach. Alexandra Parvan's contribution to the person‐centred approach serves to motivate an exploration of the approach's most apt metaphysical assumptions. I argue that a metaphysical thesis or assumption about both persons and their uniqueness is an essential element of being person‐centred. I apply the assumption to issues such as the disorder/disease distinction and to the continuity of mental health and illness.     

‘All the King's horses …’: the problematical fate of born‐again evidence‐based medicine: commentary on Greenhalgh,T., Snow,R., Ryan,S., Rees,S., and Salisbury,H. (2015) six ‘biases’ against patients and carers in evidence‐based medicine. BioMed Central Medicine, 13:200

The phrase ‘evidence‐based medicine (EBM)' is being used by both EBM advocates and adversaries to broadly denote the production and use of clinical research throughout the healthcare system. Recently, this trend was joined by a call for a general expansion and rebirth of EBM to encompass a diverse range of healthcare activities otherwise corresponding to person‐centred care. The call asserts that EBM is to blame for anti‐patient biases within clinical practice and in policy and public health domains. Effective critique of either EBM or of the healthcare system requires that EBM itself be properly identified as a research literacy movement that grew out of clinical epidemiology of the 1970's and 1980's. We demonstrate the ineffectiveness of inappropriately targeted critiques of healthcare under the banner of born‐again EBM. We identify the strengths and weaknesses of EBM as an educational movement drawing on the concept of literacy associated with the Brazilian educator Paolo Freire. We consider the relationship of EBM to clinical epidemiology and conclude that it cannot fruitfully divorce itself from the latter. We briefly consider existing precedents for philosophically sound conceptual platforms for advocacy of person‐centred healthcare and broad based critique of the healthcare system including relationship‐centred care. We conclude that traditional EBM, as a framework for research literacy training of both clinicians and policy makers, must continue to play a subsidiary role within an expanding patient‐centred healthcare system and that advocacy efforts on behalf of patient voice and engagement are best pursued unencumbered by subsidiary agendas.     

Understanding persons with psychological distress in primary health care

The purpose of this study was to gain more knowledge and a deeper understanding of experiences of persons living with psychological distress who seek help in primary care. Psychological distress is a state of emotional suffering associated with stressors and demands that are difficult to cope with in daily life. The lack of effective care for and difficulty in identifying psychological distress is frustrating for patients and health professionals alike. The aim was therefore to gain more knowledge about the experience of living with psychological distress. Twelve persons (nine women and three men) aged 23–51 years were interviewed. Analyses were based on a phenomenological hermeneutic method and indicated that psychological distress may be seen as an imbalance (incongruence) between the self and the ideal self, which slowly breaks down a person's self‐esteem. This imbalance was described in three dimensions: Struggling to cope with everyday life, Feeling inferior to others and Losing one's grip on life. It seems to be associated with a gradual depletion of existential capacities and lead to dissatisfaction, suffering, poor self‐esteem and lack of control. As psychological distress may be a forerunner to mental, physical and emotional exhaustion, there is a need to initiate preventive or early interventions to avoid mental, physical and emotional chaos in such patients. Patients' with psychological distress need to be involved in a person‐centred salutogenic dialogue with health professionals to become aware of and strengthen their own capacities to regain health and well‐being.     

Interactions between persons—Knowledge,decision making,and the co‐production of practice

There is now broad agreement that ideas like person‐centred care, patient expertise and shared decision‐making are no longer peripheral to health discourse, fine ideals or merely desirable additions to sound, scientific clinical practice. Rather, their incorporation into our thinking and planning of health and social care is essential if we are to respond adequately to the problems that confront us: they need to be seen not as “ethical add‐ons” but core components of any genuinely integrated, realistic and conceptually sound account of healthcare practice. This, the tenth philosophy thematic edition of the journal, presents papers conducting urgent research into the social context of scientific knowledge and the significance of viewing clinical knowledge not as something that “sits within the minds” of researchers and practitioners, but as a relational concept, the product of social interactions. It includes papers on the nature of reasoning and evidence, the on‐going problems of how to ‘integrate’ different forms of scientific knowledge with broader, humanistic understandings of reasoning and judgement, patient and community perspectives. Discussions of the epistemological contribution of patient perspectives to the nature of care, and the crucial and still under‐developed role of phenomenology in medical epistemology, are followed by a broad range of papers focussing on shared decision‐making, analysing its proper meaning, its role in policy, methods for realising it and its limitations in real‐world contexts.     

What is important for patient centred care? A qualitative study about the perceptions of patients with cancer

Background: This article deals with one of the themes from interviews in a larger qualitative study about cancer patients' perceptions of good caring. It is widely recognized today that patient centred care is important. Patients' values and perceptions must be acknowledged in order to make care evidence based and to meet the demands of quality improvement processes. Aim: The aim was to get insight in patients with cancers' perceptions of the importance of being respected as partners and share control of decisions about interventions and management of their health problems and the reasons behind their wishes. Method: Giorgio's scientific approach to phenomenology was used. Twenty cancer inpatients with various cancer diagnoses at different stages and with different prognoses were interviewed. The sampling was purposive. Ethical issues: Permission to carry out the research was given by a Regional Committee of Research Ethics in Western Norway and the data collection followed the guidelines of the Data Inspectorate of Norway. Main findings: The units of meaning identified could be clustered into three themes with significance for patient centred care from patients' perspectives: (1) empowerment (being respected, listened to, given honest information, being valued); (2) shared decision making about the treatment of the disease (discussing the treatment, but letting the doctor decide in the end); and (3) partnership in nursing care. Conclusion: Health care professionals can practise patient centred care by treating patients with respect, giving honest information, making them feel valued as persons and by inviting them to take part in all decisions about their daily life and care. However, cancer patients' desire to make decisions about their treatments must not be taken for granted. Doctors must find out the extent to which each patient wants to participate and then give the necessary information.     

Using the caring dimensions inventory as an indicator of person‐centred nursing

Aims. This paper reports findings from a large‐scale quasi‐experimental study that used a measure of caring as a means of evaluating person‐centred nursing and aims to illustrate the synergy between the concepts of caring and person‐centredness. Background. Evidence would suggest that effective person‐centred nursing requires the formation of therapeutic relationships between professionals, patients and others significant to them in their lives and that these relationships are built on mutual trust, understanding and a sharing of collective knowledge. This correlates with the conceptualisation of caring that is underpinned by humanistic nursing theories. Design. A pretest post‐test design was used in this study to evaluate the effect of person‐centred nursing on a range of outcomes, one of which was nurses’ and patients’ perception of caring. Methods. The Person‐Centred Nursing Index was the main data collection tool. The Caring Dimension Inventory and Nursing Dimensions Inventory, were component parts of the Person‐Centred Nursing Index and were used to measure nurses’ and patients’ perceptions of caring. The Person‐Centred Nursing Index was administered at five points in time over a two‐year intervention period. Results. Nurses had a clear idea of what constituted caring in nursing, identifying statements that were reflective of person‐centredness, which was consistent over time. This was in contrast to patients, whose perceptions were more variable, highlighting incongruencies that have important implications for developing person‐centred practice. Conclusion. The findings confirm the Caring Dimension Inventory/Nursing Dimensions Inventory as an instrument that can be used as an indicator of person‐centred practice. Furthermore, the findings highlight the potential of such instruments to generate data on aspects of nursing practice that are traditionally hard to measure. Relevance to clinical practice. The findings would suggest that nurses need to be aware of patients’ perceptions of caring and use this to influence changes in practice, where the prime goal is to promote person‐centredness.     

Person‐centred care: clarifying the concept in the context of inpatient psychiatry

This paper reports an analysis of the concept of person‐centred care in the context of inpatient psychiatry. It has been suggested that person‐centred care in inpatient psychiatry might differ from person‐centred care in other contexts, indicating a need to clarify the concept in this specific context. Scholarly papers from health‐related disciplines were identified following a systematic search of the electronic databases CINAHL, PUBMED and PsycINFO, covering records indexed up until March 2014. An evolutionary approach to concept analysis was applied, integrating principles for data extraction and analysis in integrative reviews. The concept of person‐centred care was defined as cultural, relational and recovery‐oriented. It aspires to improve care and calls for a transformation of inpatient psychiatry. The concept is closely related to the concepts of recovery and interpersonal nursing. The result is described in terms of attributes, antecedents, consequences and related concepts. It is concluded that the further development of the concept needs to consider the contexts of the concept at both conceptual and praxis levels. Further research should explore the nature of and relationships between context, culture, care practice and outcomes in inpatient psychiatry from a perspective of person‐centred care. The results of this analysis can provide a framework for such research.     

Why patients have a moral obligation to give care to clinicians

Progress is being made in transitioning from clinicians who are torn between caring for patients and populations, to clinicians who are partnering with patients to care for patients as people. However, the focus is still on what patients and others can do for patients, however defined. For clinicians whose interests must be similarly respected for their own sake and because they are integrally related to those of patients, what can and should patients do? Patients can be exempted from some normal social roles but are generally recognized to have moral obligations in health care. One of these obligations is caregiving to clinicians within the limits of each patient's capability. My paper moves this obligation beyond the ceremonial order of etiquette characterizing public statements on how patients should relate to others. It goes beyond a patient‐centred ethic that is consumerist in nature, to a person‐centred one that recognizes patients typically as moral agents who are dignified by recognizing the obligation to give as well as receive care as sincere benevolence. This obligation derives objective justification from divine command. It is also consistent, however, both with what people, if ignorant of their social role, would objectively produce for a hypothetical social contract, and with virtues constitutive of human nature and a relational and communitarian understanding of what it is to be a person. Including sentiment (intuition) and personal conscience, this relational identity makes caregiving intrinsically meaningful, yet caregiving also has an instrumental value to patients and clinicians. Its self‐enforcement by patients will depend on their moral code and on society making caregiving achievable for them. A moral obligation for patient caregiving may then be specified to require patients to reflect on and invest in relationships in which they can feel and show care for others sincerely and respectfully.     

‘I know what I need to recover’: Patients’ experiences and perceptions of forensic psychiatric inpatient care

Patients find forensic psychiatric care inadequate in that they are not treated as individuals and not involved in their own care. The purpose of this study was to describe patients’ experiences and perceptions of forensic psychiatric inpatient care. Semi‐structured interviews were conducted with 11 inpatients. A qualitative content analysis resulted in a recurring theme, ‘I know what I need to recover’, and three main categories: ‘A need for meaning in a meagre existence’, ‘A need to be a person in an impersonal context’, and ‘A need for empowerment in a restricted life’. Participants experienced and perceived forensic care as predominantly monotonous, predetermined, and not adapted to them as individuals, forcing them to fight and adapt to get through it and not lose themselves. Perceived needs were largely ignored or opposed by staff due to the content and structure of care. Findings suggest a need for reflective practices and patient involvement in order to develop and maintain a person‐centred and recovery‐oriented nursing practice. The study adds to previous research showing the importance of patients in forensic psychiatric inpatient care being listened to and involved in their care. The study is reported in accordance with the COREQ guidelines.     

The Quality of Life in Alzheimer's Disease Scale: direct assessment of people with cognitive impairment

Background. A need exists, consistent with a person‐centred approach to dementia care, to facilitate collaborative approaches to the assessment of quality of life. Aims and objectives. To examine the concept of quality of life, to make the case for its centrality in dementia care provision and to consider the validity and reliability of one tool (Quality of Life in Alzheimer's Disease Scale, QOL‐AD). Conclusions. The use of the QOL‐AD aligns with person‐centred principles incorporating the subjective viewpoint of the person with dementia, thereby promoting a collaborative and inclusive approach to the measurement of the concept of quality of life. Relevance to clinical practice. Utilization of QOL‐AD in clinical practice facilitates a user‐centred and collaborative approach to the assessment of quality of life. This approach is in keeping with contemporaneous forces in health and social care delivery for people with dementia.     

Person‐centred care in the Indonesian health‐care system

Person‐centred care (PCC) is defined as the health‐care providers selecting and delivering interventions or treatments that are respectful of and responsive to the characteristics, needs, preferences and values of the individual person. This model of care puts the person at the centre of care delivery. The World Health Organization suggests that PCC is one of the essential dimensions of health care and as such is an important indicator of health‐care quality. However, how PCC is implemented differs between countries in response to local cultures, resources and consumer expectations of health care. This article discusses person‐centred care in the Indonesian health‐care system.     

Using holistic interpretive synthesis to create practice‐relevant guidance for person‐centred fundamental care delivered by nurses

Nursing policy and healthcare reform are focusing on two, interconnected areas: person‐centred care and fundamental care. Each initiative emphasises a positive nurse–patient relationship. For these initiatives to work, nurses require guidance for how they can best develop and maintain relationships with their patients in practice. Although empirical evidence on the nurse–patient relationship is increasing, findings derived from this research are not readily or easily transferable to the complexities and diversities of nursing practice. This study describes a novel methodological approach, called holistic interpretive synthesis (HIS), for interpreting empirical research findings to create practice‐relevant recommendations for nurses. Using HIS, umbrella review findings on the nurse–patient relationship are interpreted through the lens of the Fundamentals of Care Framework. The recommendations for the nurse–patient relationship created through this approach can be used by nurses to establish, maintain and evaluate therapeutic relationships with patients to deliver person‐centred fundamental care. Future research should evaluate the validity and impact of these recommendations and test the feasibility of using HIS for other areas of nursing practice and further refine the approach.