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This chapter examines how user involvement or the involvement of the patient in the palliative care team can be achieved, sustained, and enhanced. It explores the ideological basis of user involvement and discusses the components within the patient-professional relationship which are the ingredients of user involvement. It also analyses individual and collective approaches to hearing and releasing the user voice in palliative care and highlights some dilemmas and practice issues in ensuring a strong consumer voice and patient-centred care.

This chapter serves as an introduction to the topic, including a brief outline of the history and development of the field. It argues that understanding patients’ experiences is a crucial element in quality assurance, helping to redress the imbalance between the technological focus of much of modern medical care and the communication and caring skills that are so important to patients. The background to the policy focus on patient-centred care is outlined, the concept is defined, and some landmark studies of illness experiences are described. The chapter ends with a discussion on how the knowledge gained from studies of health and illness experiences can be used to transform the quality of care.

This chapter considers some of the challenges experienced by professionals who care for the seriously ill and the dying. Itrecommends ‘patient-centred care’ and reviews its range and focus, and the working out of the contrast between empathy and sympathy. The mobile and transient nature of the professional carer is recognised and some of the demands arising from this are considered including the importance of effective communication and confidentiality in a multidisciplinary team and what contributes to it. Time and organisational pressures impact strongly on matters such as privacy, case conferences and mutual support. The range is diverse. Some styles and objectives of counselling are discussed. Flexibility, priority management and judgement ‘on the hoof’ are viewed as important for professional carers. The role is exhausting physically and emotionally, and comment is made on the contemporary care standard for professionals. The importance of self-care, available advice and corporate support is strongly advocated.

This chapter reviews attempts to encode evidence in risk guidelines. It argues that doctors have traditionally functioned as expert agents, making decisions for patients without providing full information in order to minimize harm and distress. By the 1970s, this approach had come to be seen as paternalistic. Compliance was replaced, rhetorically at least, by a partnership concordance model. At the same time, the development of encoded knowledge bases has come to be seen as a way of controlling the quality of both service user and expert decision-making. Three limitations of this approach are explored. Firstly, uncritical ‘selling’ of evidence-based healthcare underplays the inherent limitations of risk knowledge. Secondly, encoded knowledge needs to be supplemented by professional judgement in particular cases. Thirdly, policy makers do not always appreciate the contradiction between evidence-based practice and service user empowerment models.

Recent years have witnessed a growing discussion of the concept of patient and family engagement. This chapter explores the relationship between this concept, patient-centred care, and shared decision making (SDM). Each concept has at its core the notion of partnership between patients, families, and health professionals. Patient and family engagement and patient-centred care describe complementary and overlapping concepts, both of which also encompass SDM. However, patient and family engagement goes further by also encompassing partnership in organizational design and governance and policymaking. These ideas describe organizational-level responses which we think are required if progress is to be achieved. It is insufficient for organizations to write mission statements that mention patient centered care without at the same time evaluating the care that their providers are delivery, from the perspective of patients and their carers. Embracing this wider concept of patient engagement could help advance a broader implementation of SDM.

Shared decision making (SDM), health literacy, and patient empowerment are related, partially overlapping constructs, all associated with patient-centred care. SDM focuses on the communication and deliberation process between provider and patient during a health care encounter that aims to support effective decision making about treatment or health behaviour. Health literacy includes functional, critical, and interactional aspects, including the social skills needed to communicate effectively with health providers, and may be a prerequisite for SDM. Patient empowerment has been described as both a process of becoming empowered, and as a state of being empowered, and may be a valued health care outcome for people with long-term conditions. Patient empowerment can be achieved through patient-centred care, including SDM. However, patients can also empower themselves through participation in patient groups, and by improving their health literacy through self education. Relationships between the constructs may therefore be reciprocal.

The chapter focuses on the characteristics and benefits of inter-professional teamwork for palliative care. Well-functioning inter-professional collaboration in palliative care for older people can lead to better patient-centred care and may protect health care workers from moral distress and burnout. Input factors that determine the success of teamwork include a management and administrative organization that promotes interdisciplinary consultation and specific skills in staff members to ensure shared care goal setting. Health care workers with different professional knowledge and backgrounds not only have to attune their interventions according to the competences and needs of the other team members but also have to place the needs of the patient first. This chapter provides an example of how the inter-professional shared care matrix helps in the collaborative decision making, planning, and follow-up in palliative care for older people.

In this chapter, five junior physicians from four countries reflect on their experiences of learning about shared decision making (SDM) and integrating the principles into their own practice. They describe current weaknesses in the training provided to junior physicians that impedes their adoption of SDM. They also highlight the effects of a culture that does not prioritize SDM. At the same time, however, their tone is one of optimism. The authors provide practical examples of what junior physicians can do now to engage patients in sharing decisions, promote the concept of SDM, develop the skills required to practise SDM well, and effect change in the culture and practices of their working environments. They also have a strong message for those who educate physicians as to strategies for more effectively embedding the teaching of SDM alongside the teaching of clinical skills.

This chapter focuses on exploring decision making in the learning disability nursing field of practice. Previous chapters have covered the background about decision making, the principles, tools, and the use of evidence, as well as the way in which decision making fits in with the Nursing and Midwifery Council (NMC) Standards for Pre-Registration Nursing Education (NMC 2010) and competencies. The content of these early chapters and learning will help you to build your understanding of the issues when applied particularly to learning disability nursing skills in practice. This chapter also follows those addressing decision making in mental health nursing, children and young people’s nursing, and adult nursing. This ‘separating out’ of the fields of practice is helpful to give particular clarity and focus to issues relevant within them. It is, however, equally important to remind you that these apparently clear-cut distinctions between the disciplines are not necessarily reflected in practice, and that clients and patients do not always fit neatly into these artificial ‘boxes’. People with a learning disability have a right to equal treatment from registered nurses in adult and mental health settings, and children and young people with learning disabilities should expect the same standard of care as their typically developing peers. The NMC’s The Code: Standards of Conduct, Performance and Ethics for Nurses and Midwives (NMC 2008: 3) reminds us that ‘You must not discriminate in any way against those in your care’ and that ‘You must treat people as individuals and respect their dignity’. So, whatever your chosen future field of practice, please read on, because when people with learning disabilities require nursing, they are—and always will be—your responsibility too. Case study 12.1 has been chosen intentionally to highlight the partnership working and decision making that can go on between adult nurse specialists and learning disability nurses. The underpinning value base of decision making in learning disability nursing today is best understood with brief reference to the past. It is in recent memory for many service users that ‘home’ was a long-stay hospital ward or villa, which, despite the best efforts of nursing staff, would invariably be managed along quite regimented lines.

The author’s heart attack in his early 40s, when working as a rural general practitioner (GP) in the National Health Service (NHS). The author’s career journey: from his medical school training, working as a rural GP for the NHS, his transition to specialist training, and work as an occupational physician. The experience of doctors as patients: first from the author’s personal perspective, but also the tricky matter of treating a fellow doctor. The implications of doctors as patients. The problem of middle-aged men as patients: poor health-seeking behaviour and poor compliance. Sudden death in a patient. The author’s new focus on health and prevention, not disease and treatment. Paternalism in the doctor–patient relationship. Patients or clients? The autocratic doctor, and the concept of patient-centred care. What do patients want from their doctors? The concept of working in partnership with patients.