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Palliative and end of life care in Scotland: the case for a cohesive approach
- Author:
- SCOTTISH PARTNERSHIP FOR PALLIATIVE CARE
- Publisher:
- Scottish Partnership for Palliative Care
- Publication year:
- 2007
- Pagination:
- 64p.
- Place of publication:
- Edinburgh
This report provides recommendations to the Scottish Executive for developing a cohesive approach to palliative and end of life care in Scotland. The work was undertaken with the aim of ensuring equity in access to and standards of palliative and end of life care across Scotland on the basis of clinical need not diagnosis. This report focuses on those elements of palliative care which are likely to be delivered in the last 12 months of life, including both general palliative care and specialist palliative care.
How do we tell the children?
- Author:
- MARSHALL Julie
- Journal article citation:
- Rostrum Magazine, 111, January 2013, p.11.
- Publisher:
- British Association of Social Workers (Scotland)
The author argues for a more open and honest approach when supporting bereaved children argues for a more open and honest approach when supporting bereaved children. (Publisher abstract)
Better care every step of the way: report on the quality of palliative and end of life care in care homes for adults and older people
- Author:
- CARE COMMISSION
- Publisher:
- Scottish Commission for the Regulation of Care
- Publication year:
- 2009
- Pagination:
- 23p.
- Place of publication:
- Dundee
This report aims to raise awareness of the need for good palliative and end of life care in all care homes. Palliative care is about ensuring a good quality of life for both residents and their families at every stage of a life limiting illness which can be from diagnosis onwards. One part of palliative care is care given towards the end of life, that is, care given in the last few months, days and hours of a person’s life. This report reflects findings between April 2007 and the end of March 2008 during 1,036 inspections and three investigations into complaints. The report focuses on whether staff in care homes have an understanding of what palliative and end of life care is, and how well they are delivering palliative and end of life care to residents and their families. Inspections showed that 587 (57%) of the care homes in the sample understood the importance of providing palliative and end of life care. Examples of good practice are given throughout the report. However the report found many care homes had fallen short of best practice. Recommendations are made.
Living and dying well: building on progress
- Author:
- SCOTLAND. Scottish Government
- Publisher:
- Scotland. Scottish Government
- Publication year:
- 2011
- Pagination:
- 48p.
- Place of publication:
- Edinburgh
Living and Dying Well, the national action plan for palliative and end of life care in Scotland, was published in 2008. Its approach emphasised a person centred approach to care and care planning and the importance of communication, collaboration and continuity of care across all sectors and at all stages of the patient journey. This document records the progress which has been made across a range of areas towards achieving its aims, including outputs and recommendations, and sets out the next phase of actions required to continue building on that progress. It covers governance and leadership, national developments, NHS board implementation of Living and Dying Well, working group progress and recommendations, additional areas of development, and education and workforce development.
Improving generalist end of life care: national consultation with practitioners, commissioners, academics, and service user groups
- Authors:
- SHIPMAN Cathy, et al
- Journal article citation:
- British Medical Journal, 11.10.08, 2008, pp.848-851.
- Publisher:
- British Medical Association
A national consultation and prioritising exercise using a modified form of the nominal group technique was undertaken with healthcare practitioners, commissioners, academics, and representatives of user and voluntary groups. Primary and secondary care, specialist palliative care, and academic and voluntary sectors in England and Scotland were included in the study. 74% of those invited (210/285) participated. The stage of life to which "end of life care" referred was not understood in a uniform way. Perceptions ranged from a period of more than a year to the last few days of life. Prominent concerns included difficulties in prognosis and the availability of adequate support for patients with advanced non-malignant disease. Generalists in both primary and secondary care were usually caring for only a few patients approaching the end of life at any one time at a point in time. It was therefore challenging to maintain skills and expertise particularly as educational opportunities were often limited. End of life care took place among many other competing and incentivised activities for general practitioners in the community. More needs to be known about models of end of life care and how these can be integrated in a generalist’s workload. A greater evidence base is needed about the effectiveness and application of current tools such as the gold standards framework and Liverpool care pathway and about models of palliation in patients with diseases other than cancer. Definitions of end of life care need clarification and standardisation. A greater evidence base is needed to define models of good practice together with a commitment to provide education and training and adequate resources for service provision. More needs to be known about the context of provision and the influence of competing priorities and incentives.
Practice guide: end of life care and planning for children and young people with life-limiting conditions
- Author:
- SOCIAL WORK INSPECTION AGENCY
- Publisher:
- Social Work Inspection Agency
- Publication year:
- 2010
- Pagination:
- 40p., bibliog.
- Place of publication:
- Edinburgh
Developed in partnership by the Social Work Inspection Agency, Children's Hospice Association Scotland, and Highland Council Social Work Services, this guide is intended for people in social care and social work who care professionally for children and young people with life-limiting conditions. It was drawn up by a working group of professionals advised by parents and foster carers whose children had died, and following consultation with stakeholders. It explains the meanings of life-limiting condition and palliative care, and explores the stages and impact of changes in the lives of children and young people and those who care for them, including finding out that a child has a life-limiting condition and transitions from children's to adult services. It discusses the range and type of resources and sources of advice which may be available, support groups, end of life planning, supporting staff and carers, and bereavement support. Brief practice examples are included.
Beyond barriers: learning together
- Author:
- HENDERSON Jenny
- Journal article citation:
- Journal of Dementia Care, 17(1), January 2009, pp.30-32.
- Publisher:
- Hawker
Beyond Barriers was a two year project that aimed to promote a palliative care approach to the care of people in the later stages of dementia living in care homes across Scotland. The project brought together care home staff and relatives to participate in a three-day education programme so they could learn more about palliative care and dying with dementia. A brief summary of the project
Dying from cancer in developed and developing countries: lessons from two qualitative interview studies of patients and their carers
- Authors:
- MURRAY Scott A., et al
- Journal article citation:
- British Medical Journal, 15.02.03, 2003, pp.368-371.
- Publisher:
- British Medical Association
The aim of this article is to describe the experiences of illness and needs and use of services in two groups of patients with incurable cancer, one in a developed country and the other in a developing country. 67 interviews were conducted in Scotland and 46 in Kenya. The emotional pain of facing death was the prime concern of Scottish patients and their carers, while physical pain and financial worries dominated the lives of Kenyan patients and their carers. In Scotland, free health and social services (including financial assistance) were available, but sometimes underused. In Kenya, analgesia, essential equipment, suitable food, and assistance in care were often inaccessible and unaffordable, resulting in considerable unmet physical needs. Kenyan patients thought that their psychological, social, and spiritual needs were met by their families, local community, and religious groups. Some Scottish patients thought that such non-physical needs went unmet.