A model for occupation-based palliative care

This article presents a scoping review of 74 papers from the peer reviewed literature dealing with occupational therapy in palliative care. Five themes emerged regarding the parameters of occupational therapy in palliative care. The themes include: the importance of valued occupations even at the end of life, an exploration of how occupations change over the trajectory of a terminal illness, the balance between affirming life and preparing for death, valued occupations might be doing, being, becoming, or belonging occupations and the emphasis of a safe and supportive environment as an essential dimension for effective palliative care. These five themes are combined to form a model to guide occupational therapy in palliative care. The model offers structure and direction for occupational therapists in order to offer an opportunity for clients in palliative care to flourish toward the end of their lives.     

Continuity within primary palliative care: an audit of general practice out-of-hours co-operatives

BACKGROUND: The transfer of information between general practitioners (GPs) and their out-of-hours providers on vulnerable patient groups is essential to ensure continuity of care. This will be critical when, in 2006, NHS Direct will triage and route all out-of-hours calls. This study investigates the current use of information handover systems for palliative care patients within four out-of-hours co-operatives. METHODS: Paper records of all 13,460 contacts during August 2002 were scrutinized. Using a standardized data extraction form we recorded details on all palliative or terminal contacts, and the existence of information handover. RESULTS: Across the four co-operatives, 2.1 per cent of all calls were from palliative care patients; co-operatives held handover information for between one (1.2 per cent) and 13 (32.5 per cent) of these patients. CONCLUSION: The systems in place to alert these co-operatives to the needs of palliative care patients are currently under-utilized. As services move towards an integrated approach, scrutiny of information transfer systems and encouragement of GPs and district nurses to update information, may help to ensure better continuity of care     

The concept of disease in palliative medicine

The paper first defines palliative treatment and distinguishes it from symptomatic treatment. Then, the palliative situation is delineated as inseparably linked to the finitude of human life. Given the objectives of palliative treatment — responding to symptoms, damage to the patients' self-image, and the proximity of death — a subjective concept of disease is described, that is regarded as the focus of palliative treatment. The essence of the concept of disease is analysed as the patient's experience with a tendency of reduction of her or his vitality. Palliative medicine is shown not to be symptom-oriented, but disease — directed as other domains of medicine. Implications and practical consequences, especially the status of objective findings, of this concept are discussed and therapeutic opportunities in the palliative situation reconsidered. This revised version was published online in July 2006 with corrections to the Cover Date.     

Person‐centred care dialectics—Inquired in the context of palliative care

Although a widely used concept in health care, person‐centred care remains somewhat ambiguous. In the field of palliative care, person‐centred care is considered a historically distinct ideal and yet there continues to be a dearth of conceptual clarity. Person‐centred care is also challenged by the pull of standardization that characterizes much of health service delivery. The conceptual ambiguity becomes especially problematic in contemporary pluralistic societies, particularly in the light of continued inequities in healthcare access and disparities in health outcomes. Our aim was to explicate premises and underlying assumptions regarding person‐centred care in the context of palliative care with an attempt to bridge the apparently competing agendas of individualization versus standardization, and individuals versus populations. By positioning person‐centredness in relation to the hermeneutics of the self according to Paul Ric?ur, dialectics between individualization and standardization, and between individuals and populations were constructed. The competing agendas were related in a dialectic manner in the way that population health is of importance for the individual, and standardization is of importance for the population. The analysis suggests that person‐centred care is an ethical stance, which gives prominence to both suffering and capability of the individual as a person. The dialectic analysis points towards the importance of extending person‐centred care to encompass population and societal perspectives and thereby avoiding a problematic tendency of affiliating person‐centred care with exclusively individualistic perspectives. Considerations for person‐centred palliative care on micro‐, meso‐ and macrolevels conclude the paper.     

Establishing a district palliative care team for children

The children's palliative care team aims to ensure a high standard of care and support for children with life-threatening illnesses and their families. The team works through primary care teams and with hospital staff to ensure consistency and continuity of care and to maintain awareness of good practice and acts as a resource for staff from independent and voluntary agencies. The team consists of a consultant community paediatrician, clinical child psychologist, a dedicated social worker, sick children's trained district nurse, a senior member of staff from the children's ward, a health visitor, a school nurse, and a special school nurse. Other professionals are co-opted to the team as and when considered necessary, for example hospice consultant, pain specialist, dietician, paediatric pharmacist, chaplain. This paper describes how the children's palliative care team was set up and the first 2 years of its functioning.     

A poststructural rethinking of the ethics of technology in relation to the provision of palliative home care by district nurses

Technology and its interfaces with nursing care, patients and carers, and the home are many and varied. To date, healthcare services research has generally focussed on pragmatic issues such access to and the optimization of technology, while philosophical inquiry has tended to focus on the ethics of how technology makes the home more hospital like. However, the ethical implications of the ways in which technology shapes the subjectivities of patients and carers have not been explored. In order to explore this, poststructural theory, in particular the work of Butler, Foucault, and Deleuze, is used to theorize the relationship between subjectivity and materiality as ethically mandated on producing rather than precluding the development of subjectivities in novel ways. This theoretical understanding is then utilized through a process of ‘plugged in’ as described by Jackson and Massie that aims to link empirical data, research, and philosophical inquiry. Through this process, it is suggested that power, which the empirical data demonstrate, is frequently exercised through medical discourses and restricts patients' and carers' ability to shape the material environment of the home as a place to live and be cared for in palliative stages of illness. Alternative discourses are suggested both from the empirical data as well as other research, which may offer patients and carers the possibility of reclaiming power over the home and their subjectivities. Finally, the dichotomy between the home and hospital, mediated via technology, is posited as being problematic. It is argued the dichotomy is false and should be moved away from in order to allow an ethical embrace of technology in palliative care.     

我国姑息护理的发展现状与分析

综述了始息护理的内涵与模式，明白指出其在我国目前的发展现状，提出了我国始息护理的不足与发展的若干建议和目标。     

Divinity in nursing: The complexities of adopting a spiritual basis for care

In this paper, the historical alignment of nursing with divinity-based perspectives and modern New Age nursing theories are explored. The nature of divinity in nursing is examined, together with the complexities and issues that arise in adopting a spiritual basis for care. The work of the key theorists in this area (Rogers, Newman, Parse, Watson, Dossey) is reconsidered and fundamental epistemological problems inherent in this approach reviewed. Specific concerns with the interpretation of holistic care, adoption of doxastic logic, faith-based rationales, influence of Caucasian Judeo-Christian and New Age values, misappropriation of science, use of pseudoscience and development of divinity as social consumer product are discussed. Practical problems with using a spiritual basis in contemporary nursing practice are also explored and the alignment of divinity-based nursing theories with the modern antiscience movement is examined. Overall, the re-emergence of divinity-based nursing and spiritual basis for care may be problematic, and would seem to counter the development of an inclusive profession. Additionally, the alignment of nursing with antiscience movements rejecting biomedicine has significant public health implications. This is argued as a regressive step for the advancement of the profession.     

A community‐of‐care: the integration of a palliative approach within residential aged care facilities in Australia

In developed countries, residential aged care facilities (RACFs) are increasingly becoming the place of care and site of death for older people with complex chronic illnesses. Consequently, it is becoming ever more relevant for these facilities to provide appropriate complex, as well as end‐of‐life care for this growing group of people. Evidence‐based guidelines for providing a ‘palliative approach’ were developed and introduced in Australia in 2004, with the emphasis on improving symptom control earlier in the disease trajectory. The aim of the study reported here was to explore the extent to which a palliative approach was being used in the organisation and provision of care for older people with complex needs living in mixed‐level (a combination of low‐ and high‐level care) RACFs. This paper primarily reports on the qualitative findings. Two residential aged care organisations, one in rural New South Wales and the other in Sydney, Australia, participated. Data were collected over a 9‐month period from May until December 2008. Residents, family members and aged care staff were interviewed. Thematic analysis of participant interviews shows that while the various elements of a palliative approach are incorporated into the care of high‐level care residents, the discourse itself is not used. In this paper, we argue for a new conceptualisation of care for people in mixed‐level care facilities: a community‐of‐care, in which a palliative approach is one of several components of the care provided. The findings illuminate aged care staff experiences of providing care to high‐level care residents. They also provide valuable insights into high‐level care residents’ perceptions of their health, care provided and the way in which they foresee their care being provided in future. These findings will be important for informing clinical practice, research and policy in these settings.     

Retrospective evaluation of palliative care in Romania: the perspective of the involved professionals

Objective: Palliative care at home is a new service provision in Romania. This study evaluated retrospectively, after the patient's death, the provision of care at home from the perspective of professionals directly involved in the care process. The evaluation included assessment of the role of the professional, the functioning of the team, communication with patients and family, and overall judgment. The study is part of the development of palliative care at home, by multi-disciplinary teams in Romania.

Methods: Over a period of eighteen months five teams with a total of 19 professionals, provided palliative care for 103 patients with cancer in its terminal stage. During this period 80 patients died. A questionnaire was sent to the professionals involved. All responded resulting in 181 evaluations. These evaluations are the basis for analysis. The data were analyzed using SPSS.

Results: Of the 181 cases evaluated, 63 indicated an emotional burden on the professionals. GP's and nurses reported such a burden more frequently. A lack of knowledge of how to treat a special case was reported 56 times. This was especially so when a case was judged to be different from other cases, which often included (unexpected) complications. GP's reported cases with complications more frequently than oncologists and nurses. The multidisciplinary teams functioned very satisfactorily in treating patients. Although communication with patients/families was generally judged positively, communication with patients was sometimes viewed as problematic. The overall verdict was that the care delivered to the 80 patients was positive. Most professionals reported that they would deal with the cases in the same way again.

Conclusions: The patients who received palliative care and died, were treated well according to the professionals who evaluated the care process. Improvement of palliative care services at home may be achieved by provision of additional information on (acute) complications. Since palliative care at home is a new phenomenon in Romania, professionals working closely with the patient have to learn to cope with the emotional burden certain cases may include. Eur J Gen Pract 2005;11(3):101–6.     

Providing a children's palliative care service in the community through fixed-term grants: the staff perspective

BACKGROUND: Children's palliative care services have recently been awarded fixed-term grants, aimed at improving the provision of care for children with life-limiting conditions in the community. We report findings of a qualitative study to investigate the experience of a cohort of community children's nurses from teams involved in setting up or extending community-based children's palliative care services. The purpose of the study was to identify factors that affect service delivery, from the staff perspective, and to suggest ways of promoting their sustainable development. METHODS: Semi-structured telephone interviews were conducted with 21 nurses from 12 different teams providing palliative care for children at home and in hospices. Participants were questioned about the services they provided and their own roles in that provision. NVIVO qualitative data analysis software was used to explore themes arising from the transcribed recorded interviews. FINDINGS: Key findings were the importance of physical location in facilitating multidisciplinary communication, the importance of defining role boundaries between existing and new providers of children's palliative care, and the potentially detrimental impact of insecure funding on referral patterns and recruitment to posts. Staff named the opportunity to offer direct 'hands-on' care to families, access to work-based support and networking opportunities as important factors in helping them cope with the stresses involved in managing finite resources and the emotional challenges of their work. CONCLUSIONS: The maintenance of a mixed caseload with a significant proportion of direct care, provision of ongoing support and clearly defined roles are recommended as means of bolstering the ability of staff to develop their services. The deliberate locating of services to enhance communication between staff and guidance on the preparation of funding applications may further contribute to the sustainability of these services.     

Human nature: a foundation for palliative care

Abstract  The Aristotelian-Thomist philosopher holds that human intellectual knowledge is possible because of the order in the world and natural human capacities. It is the position of this paper that there is a shared human form or nature that unites all humanity as members of the same kind. Moral treatment is due to every human being because they are human, and is not based upon expression of abilities. Humans have substantial dynamic existence in the world, an existence which overflows in expressive relationships. As both patient and health professional are human, human nature forms the natural foundation of health care. This paper looks towards human nature for moral guidance. The therapeutic relationship is seen as a part of the interpersonal moral space formed by human relationality, which tends towards community – in this case, the healthcare system. The therapeutic relationship is also a source of moral responsibility, as illness makes the patient vulnerable, while knowledge and nursing capacities generate in the nurse a duty to care. Nursing theory serves to connect philosophical reflection and nursing practice. Imogene King's conceptual system and theory of Goal Attainment is the theory that follows from the perspective of human person being presented. This synthesis of philosophy and theory is developed with the goal of shedding light on healthcare decisions in palliative care. The article concludes with the acknowledgement that the complexity of contextualized individual decisions requires the insight and discipline of the moral practitioner, and provides some thoughts on how education, development, and refinement transform an individual into a nurse.     

'It's different from my culture; they're very different': Providing community-based, 'culturally competent' palliative care for South Asian people in the UK

This article investigates the challenges faced by those trying to develop 'culturally competent' palliative care for South Asian cancer patients in Luton, UK. It discusses the findings of a phenomenological study of service providers' attitudes to and experiences of caring for South Asian patients. Ten semi-structured in-depth interviews were carried out with a range of staff who work in home and community-based palliative care settings, including nurses, community liaison personnel and representatives of non-statutory organisations. The authors begin by considering how these service providers construct ideas of cultural difference and how these relate to philosophies of palliative care. They then examine attempts to deal with cultural diversity in everyday practice, focusing in particular on the social context of care in the home. The paper considers the ways in which staff attempt to incorporate the cultural needs of patients, family, kin and community. Rather than criticising current working practices, the authors highlight the complexity of delivering culturally competent services from the perspective of those working directly with patients. In doing so, they contribute to ongoing debates about the development of anti-discriminatory practice in health and social care.     

The problematic allure of the binary in nursing theoretical discourse1

Abstract Recent ideological positioning on the world stage has born a startling resemblance to a form of positioning within nursing theory – that of taking complex ideas, reducing them to a simplistic binary form, and uncritically adopting one half of that form. In some cases, this adoption of a binary position has led to a passionately held form of ‘othering’ that prohibits a healthy and critical engagement with ideas. As alluring as settling for the binary form may be – we argue for holding binaries in tension as a catalyst for stimulating dialogue – reasoning and exploration of new ways of wrestling with the social and moral complexity of nursing.