A plan is in place.. Advance care planning in diagnostic memory services Dr Juliette Brown, Higher Trainee in Psychiatry, East London NHS FT juliette.brown@elft.nhs.uk Veronica Samuel, Social Worker, Tower Hamlets Memory Service 26 January 2017
Why ACP? Why in memory services? How to include ACP..
Your understanding of ACP?
Your understanding of ACP? Process of discussion in a life limiting illness Wishes and views on future care Formalised in Advance statement Advanced decision (to refuse treatment) Lasting Power of Attorney
Why plan for the future? End of life care worse in dementia (Sampson, Gould and Blanchard, Age and Ageing 2006) Planning improves end of life care (Tierney et al 2001; Wright et al 2008; Detering et al 2010) ACP leads to improved knowledge and delivery of people s wishes (Detering et al 2010) Opportune window before capacity is lost and communication difficult (O Kelly et al, 2015) but ACP can still go on via LPA / with carers / in best interests And provide a better experience for carers (Wright et al, 2008; Detering et al 2010)
Why plan for the future? Sense of control and autonomy (O Kelly et al, 2015) Less anxiety (Poppe et al, 2013) Reduces sense of being a burden to others (O Kelly et al, 2015) Promotes adjustment to diagnosis (Brown, 2016)
Why in memory services? When no-one feels confident or experienced enough to start these conversations And everyone hopes someone else is doing it And everyone worries about causing distress and cultural insensitivity
Why in memory services?
Why in memory services? Feels unsupported after diagnosis Wants information and control over decisions Will present many opportunities for ACP but not while she s in contact with services May not see another professional with your skills for years
How do we start ACP in memory services?
Using a behavioral change model to deliver ACP in MS Specialist training (Conversations for Life) - for 35 staff provided motivation, understanding of the issue, increased confidence and knowledge. Service user involvement in design of project Phase 1 Phase 2 Motivation and understanding Competence Clarity about what was required Series of reflective practice sessions Testing ideas and approaches together. Tackling obstacles. Practice sharing across trust and externally Recognition of achievement Devolved champions Local systems to embed into practice Phase 4 Sustainability Phase 3 Opportunity Opportunities to provide intervention identified in teams Shared resources provide stimulus to initiate conversations Feedback loops
Starting a conversation Identify who has capacity Clinician records if not Capacity for ACP forms part of feedback report Phase 1 Phase 2 Everyone with capacity gets information NCPC leaflet Assume capacity at feedback Information at feedback Local champions Offer more detailed follow up Meet to explain AS, ADRT, support with LPA Have a template to structure conversation Phase 4 Follow up Phase 3 Offer further information Identify those looking for further information From all parts of the pathway Signpost and / or refer
The impact Empowerment Permission to start conversations Surfacing psychological needs Remaining person centred Reducing conflict in families Getting involved in post diagnostic support
How do you start ACP in memory services?
Take home? EoL care is poor Better care involves people with dementia in their future Memory services have a role to play In the context of the new pathway: there should be no CP without ACP juliette.brown@elft.nhs.uk
References Brown, J. Advance care planning in dementia. The Lancet Psychiatry, 2015, Volume 2, Issue 9, 774-775 Brown, J. (2016) Self and identity over time: dementia. J. Eval. Clin. Pract., doi: 10.1111/jep.12643. O'Kelly, A, Howarth, G, Richards, G et al. Advance care planning for end of life care. The Journal of Dementia Care (London). March/April 2015; 23: 2 National Council for Palliative Care. http://www.ncpc.org.uk/sites/default/files/advancecareplanning.pdf National Council for Palliative Care. Planning for your future care leaflet: http://www.ncpc.org.uk/sites/default/files/planning_for_your_future_updated_sept_2014%20%281%29.pdf NHS Choices Advance Statements: http://www.nhs.uk/planners/end-of-life-care/pages/advance-statement.aspx Office of the Public Guardian: https://www.lastingpowerofattorney.service.gov.uk/home#/guide/topic-lpa-basics Poppe M, Burleigh S, Banerjee S. Qualitative evaluation of advanced care planning in early dementia (ACP-ED). PLoS One2013;8:e60412 Robinson L, Dickinson C, Rousseau N, Beyer F, Clark A, Hughes J, et al. A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia. Age Ageing2012;41:263-9.. Robinson L, Dickinson C, Bamford C, Clark A, Hughes J, Exley C. A qualitative study: professionals experiences of advance care planning in dementia and palliative care, a good idea in theory but... Palliat Med2013;27:401-8. Sampson, EL and Burns, A. Planning a personalised future with dementia: the misleading simplicity of advance directives. Palliat Med. 2013; 27: 387 388 Sampson EL, Gould V, Lee D, Blanchard MR. Differences in care received by patients with and without dementia who died during acute hospital admission: a retrospective case note study. Age Ageing. 2006 Mar;35(2):187-9. Epub 2006 Jan 11. Skills For Health training: http://www.skillsforhealth.org.uk/resources/service-area/182-end-of-life-care Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA2008;300:1665-73.
Thanks to: Dr Anna Moore, Director, Integrated Mental Health Programme UCL Partners; Dr Caroline Stirling, Clinical Lead and Consultant in Palliative Medicine, End of Life Care Lead UCLPartners ;Laura Stuart Neil, UCLPartners; Dr Amar Shah, Associate Medical Director, East London NHS Foundation Trust; Dr Kevin Cleary, Medical Director, East London NHS Foundation Trust; Neil Ralph, Anthony Senner and James Cain at HENCEL. At City and Hackney: Dr Sandra Evans, Richard Reynolds, Dr Emma Teper, Nick Mooney, Marianne Roots, Mahmood Dilloo, Ahmet Karabiyikli, Sameer Joomun, Steve Reading, Martyn Cooper, Fatima Kamara, Perpetua Ntulila, Dr Kapila Sachdev. At Newham: Dr Tom Smith, Ruth Lisk, Sipho Malinga, Alex Lewis, Adam Fyffe, Pauline Davis, Lesley Smith, Dr Mina Bobdey, Claire Smith. At Tower Hamlets: Corinne Drummond, Leores Britanico, Jonny Stockdale, Mary-Ann Tait, Sam Ahulu, Veronica Samuel, Fatima Begum, Christine Hopkirk, Dr Nick Bass. Dr Cate Bailey, Sarah Mills and Jean Campbell. Dr Hugo De Waal, Ruth Evans, Katie Nichol, Strategic Clinical Network for Dementia. Ken Courtney at Barnet, Enfield and Haringey Mental Health Trust. Suzanne Joels and Emily Van der Pol at Camden and Islington NHS Foundation Trust. Stephen O Connor, Joanne Rodda, Janet Carter and Stephen Clements at North East London NHS Foundation Trust. Charles Olujugba at South Essex Partnership Trust.