Resources

Glossary

• ACP: The process of discussion between patients affected by terminal and life limiting illness, their family members and health professionals, about treatment options and future plans for care especially in the event that they should lose mental capacity. ACP provides patients with an opportunity to make their wishes known in advance, particularly about treatments that they do not wish to receive, and where they would prefer to be cared for in the last days of life. ACP may involve informal discussions, or may be documented, but should be reviewed and updated regularly to reflect changes in individual perspectives and circumstances.
• Citation: Alzheimer’s Disease (AD) is the most common cause of dementia. It is estimated to affect about 800,000 people in the UK and involves progressive, degenerative changes to the brain which result in symptoms such as memory loss, confusion, changes in mood and difficulties in communication and coordination. Although the causes of AD are unknown, the incidence of AD increases with age. This largely accounts for the greater number of women who are affected. There is currently no cure or means of preventing AD, though treatment may slow its progression or alleviate the effects of some symptoms.
• Amber Care Bundle: An integrated pathway developed to aid decision making and care management of the intrinsic prognostic uncertainty often attending frail older patients in acute hospital settings. The pathway allows for the possibility of different outcomes. Active treatment may be continued alongside palliation until it becomes apparent whether the patient can recover.
• Delirium: A temporary state of mental confusion and fluctuating consciousness which can be induced by a range of disease states and conditions, including infection. Symptoms include anxiety, disorientation, hallucinations, delusions, and incoherent speech.
• Dementia: Refers to the effects of a range of degenerative brain diseases, the most common being Alzheimer’s Disease. Symptoms include memory loss, mood changes, and problems with communicating and reasoning.
• Dyspnoea: Breathlessness, difficulty with breathing.
• End of Life Care Strategy: The End of Life Care Strategy was published by 2008. It recognised the significance of end of life care and the need to improve the quality and equity of palliative care throughout the UK. The strategy prioritised patient choice and involvement in decision making. In addition to improving care of the dying, the strategy aimed to promote greater public awareness openness to death and dying as topics of discussion and future planning.
• EPAC: Provides a comprehensive electronic record, including recorded preferences for end of life care, which can be shared and quickly exchanged between professionals from all health and social services providing palliative care for an individual patient approaching the end of life.
• Euthanasia: Euthanasia involves intentionally acting to end a life as a means of relieving intractable and extreme pain and suffering caused by terminal or incurable disease. Passive euthanasia involves the withholding or cessation of treatments, such as antibiotics, which could prolong life with the intention of hastening death. Intention is critical in this context: withholding or withdrawing treatments which are judged to have no therapeutic benefit, or administering treatment to relieve suffering but which may have an unintended consequence of shortening life, do not constitute euthanasia. Active euthanasia involves the use of substances, such as lethal injections, to end life. In several European countries (Luxemburg, Belgium and the Netherlands) voluntary euthanasia (i.e. requested by a patient) is legal, but this is not currently the case in the UK.
• Liverpool Care Pathway (LCP): Is an integrated care pathway used to support patients and their families in the last days and hours of life. It signals a transition from active treatment to comfort care, tailored to the particular needs and circumstances of each patient. The LCP has been widely regarded as an important means of improving the quality of end of life care for hospital patients. However, recent media controversy and concerns that it was being used inappropriately prompted an Independent Review of its implementation. The Review recommended that the LCP should be phased out in England, and replaced with personalized, tailored end of life care plans for each patient (Department of Health, 2013).
• Palliative Care: Management of pain and other symptoms in patients with terminal and life limiting illness. Holistic care includes psychological, social and spiritual support. The goal of palliative care moves from active treatment for disease to improving quality of life.
• Rapid Discharge Home to Die Pathway: Provides a model of care which enables rapid integration of services to support a hospitalised patient to be discharged home to die. The pathway may be implemented within 24 or even 4 hours, in cases where death is anticipated to be imminent.

Books and Journals

Bee, H and Boyd, D. (2004) The Developing Child 10th ed.. Pearson.
Blakemore, SJ and Frith, U. (2005) The Learning Brain: lessons for education. Oxford: Blackwell.

Every death is different - Print summary

This is the second of two RLOs about hospital as a place of death. It is based on case studies and material derived directly from the findings of a research project funded by the Alzheimer’s Society. This study explored the care of older patients dying on acute hospital wards, and whether the care of patients with dementia differed from those without.

Learning outcomes

By completing this resource you will have:

1. Gained an awareness of care interventions that can support a good death in hospital
2. Applied these insights to case studies based on recent research.

Please type any additional notes and comments you have on this resource in the field below: Print

Learning outcomes

By completing this resource you will have:

1. Gained an awareness of care interventions that can support a good death in hospital
2. Applied these insights to case studies based on recent research.

This resource was developed by:

We thank the Alzheimer’s Society for funding the Caring for Frail Older People Study, and the ward staff and family carers for their time and contribution to the research. This RLO was developed in association with HELM, School of Health Sciences, University of Nottingham. We are grateful to Heather Wharrad and Mike Taylor for their help and input, and especially to the web developer, Liz Hilton for her patient and creative design of the resource. We also thank student and staff members from the School of Health Sciences for voicing the extracts from respondents’ interviews which are included in the RLO, and Deidre Scherer for permission to reproduce her artwork.

RLO authors:

Kristian Pollock, Glenys Caswell, Becky Whittaker, School of Health Sciences, University of Nottingham
Rowan Harwood, Nottingham University Hospitals NHS Trust and University of Nottingham
Davina Porock, University at Buffalo, State University of New York.

Contact for further information:
Kristian Pollock
School of Health Sciences
University of Nottingham
Queen’s Medical Centre
Nottingham NG7 2HA
Tel 0115 8230810
Email kristian.pollock@nottingham.ac.uk

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