Improving end of life care in dementia in acute care through collaborative working. Angela Moore Admiral Nurse

Transcription

1 Improving end of life care in dementia in acute care through collaborative working Angela Moore Admiral Nurse

2 Understand the interplay between national policy and professional guidance when providing end of life care for the person with dementia and their family in the acute care environment, The Impact of policy and legislation The complexity of identifying end of life care in person with dementia The benefits of collaborative working

3 Increased interest in palliative and end of life care for people with dementia. Influence of Publications such as The End of Life Care Strategy English National Dementia Strategy Prime Ministers Challenge. All have highlighted need for improvement in end of life care for person with in dementia (Dening et al 2016)

4 Public Health England (2016) reported a 48% increase in emergency admissions for people with dementia often for potentially preventable conditions.

5 One in three people dying with dementia in the UK Challenging due to generalist knowledge of the dying phase Many patients with dementia will also have other illnesses or disability Multi morbidity and frailty form the most common disease pattern found among the elderly

6 Involve the multidisciplinary team Discuss prognosis Advance care planning Support families to understand their involvement in the decision making process Incorporate the views of the person with dementia Understand the dynamics of a family's relationships, family's perception of care.

7 Ethical Problems arise frequently when caring for person with dementia Are often problematic and stressful for those providing care either for professional or family carer. Laws and legislation may have a role to play but may not always provide definitive answer Lack of Staff support for ethical decision making Often lack of ability to recognise End of Life in person with dementia.

8 Diagnosing the terminal phase of the illness. Establishing goals of care. Decision making when the patient cannot actively participate Communication with the family. Lack of Specialist support to meet the needs of the carer families may have difficulty with proxy decision making.

9 96 year old lady admitted to acute care diagnosis of vascular dementia. Pseudo bowel obstruction 6 months previously for palliation and no further admission to acute care discharged at this time with just in case medication. Re admission distended abdomen, pain, decline in cognitive status and pneumonia. Conflict between professionals and family carers with supporting medication management EOL Poor symptom control for person with dementia in last days of life (Moore & Dening 2017)

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11 Planning treatment How long can treatments prolong life Lack of information re diagnosis and prognosis Maintain quality Of life Drs Role Relieve suffering Sustain life

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14 Many people by the time they reach the end of their lives, Have multiple conditions and complex needs requiring a proactive co ordinated response Decision making process for person with dementia and family fraught with complex family, ethical and legal dilemmas. Despite this it is a relatively new area of research Miller L, Whitlatch C, Lyons K (2016) Disparity in EOL care pathway of patients with cancer, compared to patients with other kinds of terminal illnesses, including dementia.

15 Family felt listened to Establishing a concordant relationship helped improve communication between professionals family carers Impact on staff support with complexity of decision outcomes. Integrated MDT working

16 CONCLUSION The disease trajectory of dementia makes identification of the terminal phase difficult. Patients with dementia should have a well-managed palliative care pathway at the end of life (EOL), as those that currently exists for terminal cancer Influencing factors leadership and management of care integrating clinical expertise continuity of care the use of guidelines and care pathways

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18 Ambitions for palliative and end of life care a national framework for local action Arcand M. End-of-life issues in advanced dementia: Part 1: goals of care, decision-making process, and family education. Canadian Family Physician. 2015;61(4): PLOS ONE J DOI: /journal.pone July,2016 Harrison Denning K, King M, Jones L, Vickestaff, Sampson L,k. Advanced Care Planning in Dementia: Do Family Carers Know the Treatment Preferences of People with Early Dementia? Department of health (2008). End of Life Care Strategy: Promoting high quality care for all adults at end of life. London: HMSO Dementia 2016, Vol 15 (5) Shared decision making in dementia: A review of patient and family carer involvement Sage publishing Henry C and Seymour J. Advance care planning: a guide for health and social care staff. London: National End of Life Care Programme, Department of Health, 2007 House of Commons Health Committee Palliative Care: fourth report of session Paragraph parliament.uk/pa/cm200304/cmselect/cmhealth/454. Accessed November 26 th 2016

19 Lee RP, Bamford C, Exley C, Robinson L. Expert views on the factors enabling good end of life care for people with dementia: a qualitative study. BMC Palliative Care. 2015;14:32. doi: /s Miller LM, Whitlatch J C, Lyons SK, Shared decision- making in dementia: A review of family and carer involvement. Dementia 15(5) Sage publishing Moore A, Dening K H Communication in end-of-life care for people with dementia: an Admiral Nurse case study British Journal of Neuroscience Nursing April/May 2017 Vol 13 No 2 NICE National Institute for Health and Care Excellence (NICE) (2011 Modified 2013). Quality standard for end of life care for adults. NICE Quality standard 13. London: NICE. The Department for Constitutional Affairs, (2007). The Mental Capacity Act 2005 Code of Practice. United Kingdom: Crown Copyright. The Gold Standards Framework. Gold Standards Framework Position Paper: For the NHS End of Life Care Programme. UK: Edited by The Gold Standards Framework; 2007 World Health Organisation Strengthening of palliative care as a component of integrated treatment within the continuum of care. 2014