Moral Boundaries: A Political Argument for an Ethic of Care

Family caregiving affects millions of Americans every day, in all walks of life. At least 17.7 million individuals in the United States are caregivers of an older adult with a health or functional limitation. The nation's family caregivers provide the lion's share of long-term care for our older adult population. They are also central to older adults' access to and receipt of health care and community-based social services. Yet the need to recognize and support caregivers is among the least appreciated challenges facing the aging U.S. population. Families Caring for an Aging America examines the prevalence and nature of family caregiving of older adults and the available evidence on the effectiveness of programs, supports, and other interventions designed to support family caregivers. This report also assesses and recommends policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults.

Families Caring for an Aging America

Shared decision-making is increasingly advocated as an ideal model of treatment decision-making in the medical encounter. To date, the concept has been rather poorly and loosely defined. This paper attempts to provide greater conceptual clarity about shared treatment decision-making, identify some key characteristics of this model, and discuss measurement issues. The particular decision-making context that we focus on is potentially life threatening illnesses, where there are important decisions to be made at key points in the disease process, and several treatment options exist with different possible outcomes and substantial uncertainty. We suggest as key characteristics of shared decision-making (1) that at least two participants-physician and patient be involved; (2) that both parties share information; (3) that both parties take steps to build a consensus about the preferred treatment; and (4) that an agreement is reached on the treatment to implement. Some challenges to measuring shared decision-making are discussed as well as potential benefits of a shared decision-making model for both physicians and patients.

Shared Decision-making in the Medical Encounter: What Does It Mean? (Or, It Takes at Least Two to Tango)

Aims and objectives.  The aim of this paper was to review the current literature clinical decision-making models and the educational application of models to clinical practice. This was achieved by exploring the function and related research of the three available models of clinical decision making: information-processing model, the intuitive-humanist model and the clinical decision-making model.

Background.  Clinical decision making is a unique process that involves the interplay between knowledge of pre-existing pathological conditions, explicit patient information, nursing care and experiential learning. Historically, two models of clinical decision making are recognized from the literature; the information-processing model and the intuitive-humanist model. The usefulness and application of both models has been examined in relation the provision of nursing care and care related outcomes. More recently a third model of clinical decision making has been proposed. This new multidimensional model contains elements of the information-processing model but also examines patient specific elements that are necessary for cue and pattern recognition.

Design.  Literature review.

Methods.  Evaluation of the literature generated from MEDLINE, CINAHL, OVID, PUBMED and EBESCO systems and the Internet from 1980 to November 2005.

Results.  The characteristics of the three models of decision making were identified and the related research discussed.

Conclusions.  Three approaches to clinical decision making were identified, each having its own attributes and uses. The most recent addition to the clinical decision making is a theoretical, multidimensional model which was developed through an evaluation of current literature and the assessment of a limited number of research studies that focused on the clinical decision-making skills of inexperienced nurses in pseudoclinical settings. The components of this model and the relative merits to clinical practice are discussed.

Relevance to clinical practice.  It is proposed that clinical decision making improves as the nurse gains experience of nursing patients within a specific speciality and with experience, nurses gain a sense of saliency in relation to decision making. Experienced nurses may use all three forms of clinical decision making both independently and concurrently to solve nursing-related problems. It is suggested that O'Neill's clinical decision-making model could be tested by educators and experienced nurses to assess the efficacy of this hybrid approach to decision making.

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A review of clinical decision making: models and current research

New support role for nursing Health Education England (HEE) is seeking views on a proposal to introduce a nursing associate role to support registered nurses in patient care delivery. HEE wants opinions on whether this new role should be established at all, the potential contributions to patient care across a variety of settings, what the role parameters should be, what education and training will be required, and how the role should be regulated. To respond to the consultation, which closes on March 11, go to tinyurl.com/nursing-associate

Mental Capacity Act

A number of researchers have sought to understand what enables the 'expert' professional to achieve a rapid and effortless understanding of presenting situations. Central to many of the explanations offered is the term 'intuition'. It might be thought, therefore, that the word describes a coherent concept embracing certain related features and used with consistency. A study of the literature suggests that this is not so. 'Intuition' is more than a contested concept, it is also used in ways that lack both clarity and coherence. Some of the confusion associated with the concept seems to stem from the belief that intuition is an irrational process. As a consequence, it is assumed that intuition can be neither fully understood nor explained. In this paper we discuss a number of issues relating to the nature of 'intuition'. We argue that intuition may be understood as an irrational process that has a rational basis. Intuitive thinking has certain essential features and involves the use of a sound, rational, relevant knowledge base in situations that, through experience, are so familiar that the person has learned how to recognize and act on appropriate patterns.

Intuition and rational decision-making in professional thinking: a false dichotomy?

Peer support is well established in fields such as the disability movement and mental health and is increasingly recognised as one way of enabling support by and for people with a diagnosis of dementia and their immediate carers. It was central to the implementation of the National Dementia Strategy (NDS) for England, when 40 demonstration sites were established. This mixed-methods study included in-depth qualitative interviews with people living with dementia (n = 101) and staff/stakeholders (n = 82) at 8 of the 40 sites. Data analysis was a five-stage process: coding framework developed (using 25 transcripts); further development of the framework (using a further 70 transcripts); development of emerging themes; modelling of themes and verification of models based on the entire data set. Peer support had positive emotional and social impact that was rooted in identification with others, a commonality of experience and reciprocity of support. There was also a contrast between the quality of peer support and support from professionals. This emphasises the significance of lived experience and promoting a strength-based approach to interpersonal support that is enabling and challenges a deficit approach to understanding dementia.

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“We’re all thrown in the same boat … ”: A qualitative analysis of peer support in dementia care:

This study aimed to provide an in-depth understanding of the process of hospital discharge experienced by the carers of patients ‘at risk’ of unsuccessful discharge from medical wards in three hospitals in the North of England. Background. The Community Care Act and the Carers Recognition and Services Act placed responsibility on service providers to ensure the smooth discharge of patients from hospital making sure that appropriate community services are in place to support the patient and their informal carer following discharge from hospital. The study, from which this paper is taken, identified patients at risk of unsuccessful discharge and tracked the experiences of the patient and their carer through the discharge process. For the purpose of the study unsuccessful discharge is defined as unplanned readmission within 6 weeks of discharge or extended length of stay. Design. The study combined qualitative and quantitative methods to identify factors leading to unsuccessful discharge. Logistic regression was used retrospectively with the records of 1500 patients to identify factors predicting unsuccessful discharge. A sample of medical patients predicted to be at risk of unsuccessful discharge, their formal and informal carers, were followed through the discharge process using qualitative techniques to look at decision-making and outcomes related to discharge. Findings. This paper presents findings relating to patient/carer experiences of the discharge process. It explores the obligate moral climate in which the role of carer is negotiated between professionals, patients, family members, friends and neighbours and the differing assumptions about duty associated with caring roles in hospital and in family and community settings. Conclusion. The discussion adopts a critical theory perspective to examine the contradictions confronting practitioners, patients and carers arising from hospital policies which promote cost-effective and efficient use of expensive technical resources while simultaneously seeking to identify and meet the needs of patients and carers for care.

Going home from hospital: the carer/patient dyad

This paper reports on a Post-doctoral Regional Health Authority Fellowship (Clarke). It is an early paper on conceptualising practice development and led to numerous requests for keynotes presentations. It is innovative in its use of soft systems methodology and was the conceptual foundation of the DNSc at Northumbria.

Professional and organizational learning: analysing the relationship with the development of practice

Background. The 1990 NHS Community Care Act established a requirement for hospital discharge policies and procedures in the United Kingdom to be developed in collaboration with local government authorities in order to ensure supported discharge for those in need.

Aims.  The aim of the study reported in this paper was to track decisions about hospital discharge in relation to outcomes for a sample of medical patients and their carers, identified as at risk of experiencing unsuccessful discharge processes.

Methods.  Themed unstructured interviews were conducted in three different hospitals with 30 patients identified as at risk of unsuccessful discharge and their carers pre- and postdischarge. Hospital, community and social care staff involved in the care of the patient were also interviewed.

Findings.  Patients and carers were constantly negotiating their social roles, seeking to juggle appropriate identities and limited resources to maintain their own and each others’ dignity and quality of life. When the negotiation process was destabilized (for example, by exacerbation of chronic disease, withdrawal of some resource, or the experience of additional stressors – not necessarily health-related), then either or both parties sought a way out. In all the cases examined the result was admission to hospital – usually, but not always, mediated by community professionals.

Conclusions.  The effective discharge of patients from hospital needs to move from a functional focus on symptom management to a negotiation of quality of life that seeks to promote health for all parties involved.

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Jane Wilcockson

Papers

Intuition and rational decision-making in professional thinking: a false dichotomy?

“We’re all thrown in the same boat … ”: A qualitative analysis of peer support in dementia care:

Going home from hospital: the carer/patient dyad

Professional and organizational learning: analysing the relationship with the development of practice

The process of hospital discharge for medical patients: a model.