Practical effects of educating nurses on the Natural Death Act
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Abstract This chapter discusses palliative, or home-based, care, an often-neglected area of community health. It explains the nature of palliative care, when it is needed, and who requires it. It describes palliative care from a global perspective and as a component of Universal Health Coverage. It discusses the barriers and gaps to delivering palliative care and suggests how palliative care is possible with limited resources. It explains models of palliative care and how others have set up community care initiatives. It covers the concept of how good communication is a crucial key in palliative care, and then outlines how to assess the need for palliative care and medication, identify patients, approach families, and care for physical, psychological, emotional, and spiritual end-of-life needs. It ends with how to support the palliative care team.
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Hospice and palliative care is an essential component of the continuum of care for people living with HIV/AIDS. There is considerable symptom burden associated with HIV/AIDS throughout the course of the illness and palliative care is valuable both in optimizing functioning as well as at the end of life. In this presentation we will explore the extent of the need for palliative care in HIV/AIDS, the problems that are responsive to palliative care, the range of available palliative interventions, and how palliative care can be incorporated into ongoing anti-retroviral therapies. We will examine the differences between supportive and palliative care as well as the public health implications for palliative care. Where ever possible palliative care must not be a substitute for active disease therapy. Appropriate palliative care as defined by WHO, must include impeccable assessment and treatment of pain and other symptoms using an interdisciplinary team skilled in addressing all the dimensions of the human experience for PLWHVA's and those who care for them.
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As the need for palliative care increases, palliative care is emerging as a field of medical care in its own right. At the same time there are many aspects of palliative care that are problematic, particularly in palliative care education. The aspects reviewed here include: (a) the lack of a long tradition and adequate concep-tualization of palliative care; (b) the significance of psychological, emotional, and spiritual aspects; (c) the importance of but inadequate understanding of symptom control; (d) the fact that palliative care is not curative in the accepted sense; (e) its multiprofessional nature; (f) the range of different settings of palliative care; and (g) the fact that palliative caregivers have to perform their duties in situations where the emotional and psychological demands on them may be immense. A number of general issues relevant to palliative care education are also reviewed.
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Background: Parkinson’s disease is a common, life-limiting, neurodegenerative condition. Despite calls for improved access to palliative care for people with Parkinson’s disease, services have been slow in developing. Obstacles include poor understanding and recognition of palliative care needs, the role for specialist palliative care services and an agreed structure for sustainable palliative care provision. Aim: To summarise the evidence base for palliative care in Parkinson’s disease, linking current understanding with implications for clinical practice and identifying areas for future research. What is known: Convention recognises a final ‘palliative phase’ in Parkinson’s disease, while qualitative studies suggest the presence of palliative care need in Parkinson’s disease from diagnosis. Clinical tools to quantify palliative symptom burden exist and have helped to identify targets for intervention. Dementia is highly prevalent and influences many aspects of palliative care in Parkinson’s disease, with particular implications for end-of-life care and advance care planning. Implications for clinical practice: The ‘palliative phase’ represents a poor entry point for consideration of palliative care need in Parkinson’s disease. An alternative, integrated model of care, promoting collaboration between specialist palliative and neurological services, is discussed, along with some specific palliative interventions. What is unknown: Limited evidence exists regarding timing of palliative interventions, triggers for specialist referral and management of terminal care. Implications for future research: Research examining access to palliative care and management of terminal symptoms will assist development of sustainable, integrated palliative care services for Parkinson’s disease.
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Objectives To explore paediatric subspecialities' roles and their perceptions of the need for palliative care among children with long term neurological conditions (LTNC) compared with paediatric palliative care specialists. To examine the ease of access to healthcare services among children with LTNC. Design Electronic questionnaire survey of members of BPNA, BPPM, BACD, and BACCH. 24 questions evaluated different aspects of practices and attitudes of palliative care among children with LTNC by linear analog scale and multiple choice responses. Results Total of 130 respondents from different specialities completed the questionnaire: 38 (29%) paediatric neurology, 18 (14%) general paediatrics, 26 (20%) community paediatrics, 24 (18%) paediatric neuro-disability, 18 (14%) paediatric palliative care and 6 (5%) other specialities. Majority respondents, 111 (85.4%) often look after and provide end of life care to children with LTNC and 118(91%) believe palliative care would be appropriate. Most non-palliative care respondents would refer children with life-shortening (104/112, 92.9%), progressive (110/112, 98.2%) or stable (90/112, 80.4%) neurological conditions to palliative care. However, most non-palliative care respondents (74/112, 66%, p=0.013) would not refer children with life-threatening conditions to palliative care. There is notable overlap in the palliative care related activities of each subspecialty. Both palliative care and non-palliative care respondents recognised core elements of palliative care specialists to include symptom management, psychosocial and spiritual support, and management of death and bereavement support. Many respondents reported difficult or no access to specialist palliative care (62/130, 47.7%) and specific services such as clinical psychologists (84/130, 64.6%) and social services (42/130, 32.3%). Conclusions This survey highlighted the appropriateness of palliative care among children with LTNC, and revealed a gap between established palliative care guidelines and perceptions of many paediatricians. Paediatricians should recognise that every life-shortening or life-threatened child should have access to palliative care and support. To avoid duplicating care provision and competing for limited resources, there is a need for close co-ordination of services.
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Palliative care in the Netherlands is growing and the climate for further development is favourable. Although there is a great deal of consensus on the current debates within palliative care, important disagreements persist. These disagreements relate to the history of palliative care within the country, the scope of palliative care, its values, the appropriate institutional context, and the moral acceptability of euthanasia in palliative care. In this paper, the consensus and the disagreements are described and discussed. It is concluded that many disagreements emerge from so-called external goals of palliative care. It is recommended that the debate should refocus on the internal goal of palliative care, which is the quality of life of the patient and his or her loved ones.
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The aim of this study was to present the quality of palliative care to patients in need of specialist palliative care. The study was conducted in such a way that the data were collected in the Palliative Care activity of Istrian health centers. Data from patients in need of general palliative care and data from patients in need of specialist palliative care were used. The time period of the research was from 1.1.-30.6.2017. and 1.1.-30.6 2019. In the mentioned periods, a sample of the first 35 admitted patients was included. Data from the register of palliative patients were used: age, sex, diagnosis, medical history, SPICT-test, ECOG scale, VAS-scale and indicators of palliative care quality (duration of care and place of death). The data obtained from 2017 were compared with the data obtained from 2019. The survey showed that in 2017 there were more patients in need of specialist palliative care, while in 2019 there were more patients in need of general palliative care. palliative care. Given that two years have proven to be different in the provision of care (general and specialist palliative care), the results obtained do not indicate deviations in the provision of quality of specialist palliative care. Patients in need of general palliative care did not contribute to the quality of specialist palliative care.
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