Changing Minds Promoting Excellence in End of life care for people with Dementia
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IHF Changing Minds programme. Presented at International Congress on Palliative Care, Montreal September 2014
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Changing Minds Promoting Excellence in End of life care for people with Dementia
- 1. Marie Lynch, Orla Keegan, Mary Lovegrove, Jackie Crinion, Sharon Foley, Kathy McLoughlin, Caroline Lynch International Congress on Palliative Care Montreal 11 Sept 2014
- 2. Irish Hospice Foundation - Dementia Population - Policy Context 41,000 140,000 Awaiting Publication of Irish National Dementia Strategy 2014
- 3. Good end of life care for people with dementia REQUIRES ADDITIONAL EMPHASIS 1. Communication skills with people with dementia and families (PWD & F) due to cognition, capacity, lack of diagnosis 2. Assessment of end of life symptoms due to diminishing ability to communicate and co-morbidities 3. Wider MDT involvement due to complex symptoms & range of specialist involvement 4. Increase in acute events/transitions for continuity of care transitions 5. Bereavement interventions (PWD & F) Anticipated loss and longer trajectory
- 4. End of life care needs of people with dementia Multidisciplinary team involvement Care Transitions Pain & other Symptoms Communication Loss and bereavement
- 5. 2013 - 2016
- 6. Three Outcomes Palliative care for people with dementia will be prioritised in all care settings; and more people will be supported to die well at home Better end of life care in residential care settings for older people with a focus on people with dementia Increased public awareness on death and dying, with more people including those with dementia, engaging in early advance planning Practice tools, service models, primary palliative care Adaptation of Hospice Friendly Hospital resources, development and education for residential settings Roll out and adaptation of Think Ahead STRATEGIC ENGAGEMENT
- 7. STRATEGIC ENGAGEMENT 4 Project Groups Participation Dissemination REPRESENTATION: Nursing, Medicine, Palliative care, Intellectual Disability, Patient Groups Public meetings, consultations, grant funding, seminars, briefings, workshops Information leaflets, communiques, website, contact database 2013 2016
- 8. RESOURCES FOR PEOPLE WITH DEMENTIA & THEIR FAMILIES, & STAFF Palliative care for people with dementia will be prioritised in all care settings; and more people will be supported to die well at home Planning for the future Understanding late stage Loss and Bereavement Communication & advance care planning Intellectual disabilities Pain, Symptom , medication Ethical decision making Bereavement GUIDANCE DOCUMENTS
- 9. Palliative care for people with dementia will be prioritised in all care settings; and more people will be supported to die well at home Funding FOR INNOVATION & EVIDENCE BASED PRACTICE EOLC dementia pathway acute hospital Good Neighbour scheme – advanced dementia 5 REGIONAL SEMINARS Communicating end of life and dementia residential care Supporting palliative care needs when care transitions are necessary
- 10. SUPPORTING HOME DEATHS FOR PEOPLE WITH DEMENTIA Palliative care for people with dementia will be prioritised in all care settings; and more people will be supported to die well at home 3 8 12 14 25 50 63 70 60 50 40 30 20 10 0 2007 2008 2009 2010 2011 2012 2013 6 8 15 15 7 15 34 45 50 45 40 35 30 25 20 15 10 5 0 2010 2011 2012 2013 Male Female
- 11. Better end of life care in residential care settings for older people with a focus on people with dementia Need to support residential care centres meet end of life care needs of residents and comply with regulations
- 12. Better end of life care in residential care settings for older people with a focus on people with dementia End of life toolkit Online learning and support Community links EOLC toolkit Education End of life reviews Telephone support Onsite facilitation Individual tailoring for quality improvement
- 13. EDUCATION AND TRAINING FOR HEALTHCARE STAFF Ensuring good end-of-life care by giving staff the confidence and the competence to change their thinking and practice through • End-of-Life Care Training Workshops • Conferences and large-group presentations • Educational ‘bundles’ – Including slide presentations, – Film clips and animated videos, – Downloadable resources, – Online support Better end of life care in residential care settings for older people with a focus on people with dementia
- 14. Increased public awareness on death and dying, with more people including those with dementia, engaging in early advance planning
- 16. End of life care needs of people with dementia Multidisciplinary team involvement Care Transitions Pain & other Symptoms Communication Loss and bereavement
- 17. IN CONCLUSION
Editor's Notes
- The aim of this programme is to enable more older people, particularly those with dementia, to live and to die with dignity at home (as most would prefer) or in residential care settings
- Prolonged trajectory Pain Communication
- People dying from and/or with dementia are an especially vulnerable group, and their end-of-life care needs may be complicated by cognitive impairment, a prolonged illness trajectory, pain, communication difficulties and challenging behaviours. It is argued that the end-of-life care of these people should extend beyond symptom control to encompass their psychological and spiritual needs (Bayer, 2006; Tilley and Fok, 2008). Internationally, there have been many calls for improvements in their care (e.g. Volicer, 1986; Robinson et al, 2005; Mitchell et al, 2004). While early diagnosis is assumed to facilitate care planning and the recording of people’s preferences, early diagnosis is the exception rather than the norm in Ireland (Cahill et al, 2012). Research has also found that end-of-life care decisions made too close to death cause unnecessary stress for both patient and family (Grbich et al, 2006). More programmed approaches involving advance care planning with elderly patients have been shown to facilitate the meeting of their wishes, and also to reduce anxiety, stress and depression in relatives, while increasing family satisfaction (Detering et al, 2010) Public, professional and system
- WEB BASED LEARNING HUB VIDEOS
- Address the areas that particularly challenge / that have been highlighted by the audit and review for end of life care…. End of Life policies and procedures Documentation systems for EOLC and Advance Planning Discussions regarding EOLC with residents and families Legal, ethical and capacity issues regarding Advance Planning Family meetings Working with the GP Bereavement resources Removal of the body with dignity by funeral directors where coffins and hearses are not used for transportation Certification of death delays Notification of deaths to and from hospitals Access to SPC (in a minority of areas)
- Three levels of engagement depending on preference Providing education, toolkit, mentoring and on line learning addressing change management and quality improvement required to ensure people in RCC receive excellent end of life care
- What Matters to Me (a one-day workshop on person-centred end-of-life care and communication for all staff of residential care settings) Final Journeys (a one-day workshop for acute hospital staff on communication and end of life care) and Dealing with Bad News (a half-day workshop for multidisciplinary teams) e.g. HIQA conference presentations, NHI Education Days We are confident that we will reach our target of providing face-to-face training/education to 3,000 healthcare staff over the course of Changing Minds
- Introduced in 2011 2nd edition launched in 2014 21,000 forms circulated to date Citizen led tool – over 10,000 copies circulated. Supported with research by GPs in Nursing homes, GP Practices and also introduced in acute settings. Supports documentation of preferences in nursing homes
- Evaluation Steering Committee Did it make a difference? Outcome indicators associated with each project Audit and review Public polling Demonstration models Qualitative interviews
- Prolonged trajectory Pain Communication
- More awareness of end of life care needs of people with dementia – HCP and Public More resources to support good end of life care So that People with dementia in Ireland will have a better quality of life at the end of their life