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![Benefit of ACP.
• We know that most Irish older people (94%) want to be consulted about end-of-life issues such as resuscitation
and many (63%) want to be involved in medical decision making. [9, 10]
• Irish knowledge of ACDs, and indeed many issues relating to end-of-life care, is poor.[12] In a recent nationwide
survey, 71% had never heard of an ACD, and only 5% claimed to have drafted one.
• The rate of hospitalisation was lower in the intervention homes than in controls (0.27 vs 0.48, p=0.001),
• Implementing ACP in the LTC setting empowers residents to play an active role in their own personal health
management and places them at the centre of the decision-making process
• Discussing end-of-life care in advance, in an informed way, may help to prevent healthcare decisions being made
in such “crisis” situations and may prevent the initiation of unwanted treatment.
• In our survey of 165 Irish doctors only 35% knew who legally had responsibility, the majority (58%) incorrectedly
felt it rested with the family.
• .](https://image.slidesharecdn.com/planningforthefuturenhi4thapril2014-140805052441-phpapp02/85/Planning-for-the-future-Project-9-320.jpg)
Uploaded byIrish Hospice Foundation
Planning for the future Project
The document outlines the 'Planning for the Future' project aimed at addressing advanced care planning (ACP) for individuals with dementia in Ireland, highlighting the challenges in implementing these plans. It discusses the need for better understanding and communication around end-of-life care, outlining benefits of ACP, such as empowering patients and preventing crisis situations for families. Case studies demonstrate practical considerations for engaging patients and families in ACP discussions, while identifying gaps in staff training and public awareness regarding dementia care and end-of-life issues.
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Planning for the future Project
- 1. Planning for thefuture Project NHI Conference April 2014 Deirdre Shanagher & Carmel Collins
- 2. Plan. -Overview of DementiaPalliative Care In Ireland. -Identify the challenges in implementing advanced care planning for people with dementia. -Describe the Planning for the Future Project. -Case studies.
- 3.
- 4. WHAT ARE THEGAPS? 1. ? % of people with dementia receive a diagnosis. 2. ? % of PWD admitted into hospital died in acute hospital & ?% of staff receive basic training on DPC 3.?%f the general public believe PWD have poor quality of life. 4. In the National audit ,?HCR recorded a decision on resuscitation & ? % of patients receiving EOLC or on an EOLC pathway.
- 5. Stigma -62% of peoplewith dementia receive a diagnosis. (Acute hospital study found 36%) -Small portion of physicians and health care professionals believe their is effective Tx for dementia. -1/12 of PWD admitted into hospital died in hospital yet only 6% received EOLC or EOLC care pathway. UK Study 58% felt PWD had poor quality of life. UK Study 58% felt PWD had poor quality of life. (YouGov poll - Bernadine McCrory 2013 Older people specifically feared dementia over other condition. (Facing Dementia Survey 2005) National audit showed -A decision for resuscitation was documented in 32.5% of HCRs. •6% of patients (37/629) were receiving end of life care or on an end of life care pathway.
- 6.
- 7. What is AdvancedCare Planning (ACP) ACP is a communication process between the patient and his/her care providers, which may involve family or friends, about the goals and desired direction of care at the end of life in the event of loss of capacity to make decisions.
- 8. Benefits of ACP. 1.Empowers the person to play an active role & places them at the centre of their care. 2. Prevents crisis situations from arising for family & staff. 3. CP can reduce transfers to acute hospitals. 4. Prevents the initiation of unwanted treatment. 5. Clarification of roles between the family & medical team.
- 9. Benefit of ACP. •We know that most Irish older people (94%) want to be consulted about end-of-life issues such as resuscitation and many (63%) want to be involved in medical decision making. [9, 10] • Irish knowledge of ACDs, and indeed many issues relating to end-of-life care, is poor.[12] In a recent nationwide survey, 71% had never heard of an ACD, and only 5% claimed to have drafted one. • The rate of hospitalisation was lower in the intervention homes than in controls (0.27 vs 0.48, p=0.001), • Implementing ACP in the LTC setting empowers residents to play an active role in their own personal health management and places them at the centre of the decision-making process • Discussing end-of-life care in advance, in an informed way, may help to prevent healthcare decisions being made in such “crisis” situations and may prevent the initiation of unwanted treatment. • In our survey of 165 Irish doctors only 35% knew who legally had responsibility, the majority (58%) incorrectedly felt it rested with the family. • .
- 10.
- 11. What are themain challenges in completing ACP with people who have dementia. ?? ? ??
- 12. Planning for theFuture Project. Background. Motivated to capture the ‘special moments’ from people with dementia & address staff’s challenges in initiating EOL care conversations. Aim. To develop a framework to support staff with initiating EOLC discussions. Setting. 10 bed dementia unit in St Vincent’s Hospital with links to St Brigid’s Hospice. Methods . Action research. 1. Stages Understanding the setting, 2. Planning Action, 3. Taking Action & 4. Evaluation
- 13. CHALLENGES IDENTIFIED Initiating discussionon end of life care – sensitivity, momentum, phrasing & language Difficulty dealing with challenging situation – questions, emotions & symptoms Documentation – notes recorded & being representative of person’s wishes Recognising the dying phase – regular contact with the person v objectivity Clarity on Palliative & EOL care – approaches & recognition of terminal condition Supporting the family – role clarity, reassurance & additional bereavement supports
- 14.
- 15. Case Study 1. Annhas come to your nursing home after a long stay in an acute hospital where she was admitted for treatment of a chest infection. She has arrived with a recent diagnosis of dementia. Her pre-admission assessment identified that she needs assistance x1 with activities of living and she has an MMSE of 16/30. On conversing with Ann, she can follow most conversations and has some insight to where she is even though she remains adamant that she will be going home. Ann receives weekly visits from her 2 daughters who seem to have a limited understanding about dementia and are eager for her to receive all relevant treatment so “she can stay well”.
- 16. Questions. 1. What stepscould you take to maximise the opportunity for a person with dementia to engage in EOLC discussions? 2. What role does the nurse play in involving the family in ACP? 3. What are the pros and cons in completing ACP in the 1st week of Ann’s admission.
- 17. Case Study continued.. Annhas been a resident at the nursing home for 7 months and there has been a steady decline in her cognitive status. Recently, she also had a 4 day admission into an acute hospital and is currently taking another course of antibiotics. Initially when Ann arrived into the nursing home, she reported that she wanted to go to hospital when she became acutely unwell. However, last night when a HCA was helping her into bed, she mentioned that “ I really didn’t want to go back into hospital again… I’m worried, I am not getting any better… I just don’t know..”.
- 18. Questions. 1. What wouldyou feel is an appropriate action for the HCA? 2. (a)What skills and knowledge do you feel the HCA would need to be able to meaningfully engage in this conversation with Ann? (b) How do you feel this could be best provided? 3.What are the challenges in involving the HCA in advance care planning?
- 19. “Capturing the moments” -Maximising one’scapacity -Skill set of staff -Integrated into goverence
- 20. Resources Visual prompt cards EOLCform & Guidance document Symptom Management Education Communication National Dementia Education Programme Palliative Care HFH’s resources
- 21. Irish Dementia Projects. Improvesociety’s understanding - Elevator course at DCU Community response – Genio projects 2012 Acute and community hospitals - Genio project 2014. Promoting Dementia Palliative Care - IHF’s Changing Minds Prog DREAM – Advocacy group for people with dementia. Community engagement- Dementia Friendly Communities, ASI
- 22. Changing Minds Programme. Developmentof Practice Tools & Service Models. 1. GRANTS 2. Guidance Documents Young onset 4. Learning Network 5. Needs re Young Onset Dementia 3. Information Leaflets Project Advisory Group
- 23. Stay in contact Registerwith database
- 24.
Editor's Notes
- #2 Plan of session. -Overview of Dementia Palliative Care In Ireland. – 10 mins -Freedem (7 mins) -17 mins -Benefits of ACP (3mins) -20 -Groupwork (10 mins) –challenges 30 mins -Athy intro(5 mins)- 35 mins Groupwork 1st case study and feedback (20 mins) – 55 mins Groupwork 2 part of case study and feedback (20 mins)- 115mins Athy developments (5 mins) -120 Irish Project & CM Programme (10 mins)- 130.
- #3 Intro- name is Carmel Collins- OT and currently leading a dementia focused programme within the IHF which aims to develop a range of resources to support staff to deliver good end of life care for people with dementia. Plan for the day. See slide End. We plan for there to ba a lot of group discussions so there can be an opportunity for knowledge and expertise to be shared with each other.
- #4 INTRO- In taking a snapshop of how the area of dementia palliatice care has evolved over the past 15 years, there are 6 key reports which probably need to be mentioned- most of these reports are in the last 4 years which indicative of the momentum and interest recently shown in this clinical area. In Ireland, the palliative care services are underpinned by National Advisory Committee on Palliative Care (2001)1 which recognised that palliative care should be extended beyond cancer to other non-malignant terminal conditions. This movement/direction in palliative care was further reinforced by the Palliative Care for All3 (2008) report which specifically addressed the relevance of palliative care for people with COPD, heart failure and dementia and was the cornerstone in promoting the area of dementia palliative care in Ireland. In 2012, Creating Excellence in Dementia Care was funded by Atlantic Philanthropy to provide a comprehensive over of dementia care in Ireland and this report lay the foundations for the development of the Irish Dementia Strategy. In 2012, the IHF and ASI commissioned the Building Consensus For the Future Report which provided an overview of the landscape of dementia palliative care in Ireland and made key recommendation to directing the practice of dementia palliative care in Ireland. 2013 saw the development of the demential strategy working group who will hopefully be publishing the dementia strategy in the forthcoming months. Lastly in 2014, the national audit of dementia care in acute hospital was was published a few weeks ago and highlighted the vulnerability of PWD who are receiving EOLC in acute hospitals. END. So now a question -- why has the clinical area of DPC been neglected for so long ? I often believe the answer relates to the double stigma associate with first of all dementia and to death and dying.
- #5 Mercy’s acute hospital study showed that 36% of people with dementia do not receive a diagnosis – imagine if these resutls compared to another terminal condition such as cancer. Also important to consider the stage of the illness when this diagnosis was received and whether the patient had the capacity to understand and/or actively engage in the planning of their EOLC. 2. 1/12 people with dementia who are admitted into hospital die in hospital.- and the majority of health care professional receive no training on dementia never the consideration of EOLC for people with dementia. 3. UK Study 58% felt PWD had poor quality of life. This is the general public which could reflects the negative view associated with dementia before introduction the dimension of terminal or end of life care. 4. National audit of dementia care showed that resuscitation was documented in 32.5% of HCRs. •6% of patients (37/629) were receiving end of life care or on an end of life care pathway. Frighte1/12 will die in their hospital END . I suppose these stats signify to me the poor EOLC provided to PWD and emphasises the need for dementia care to really focus on personhood and highlight how the person remains very present through this disease trajectory. And we are going to show you a lovely clip that just does that.
- #7 -Freedem vidoes were launched this year and are freely available to view on the website. -Series of 8 video which provides very insightful information on dementia in a very creative way which allow the information to be communicated in a very positive way. Are a lovely resource for family and staff in nursing homes. END- How can we provide client centred care for people with dementia. An one of the keys ways in which this can be achieved is by involving the person is ACP they so play a central part in dictating their preference and priorities regarding their EOLC. So what is advance care planning.
- #8 END. How many are happy to how ACP IS completed with PWD in their N/H? What have you found to be the most beneficial results when ACP had taken place?
- #9 1. 94% want to be consulted about end-of-life issues such as resuscitation and 63% want to be involved in medical decision making. [9, 10] 5. In Irish study of 165 Irish doctors only 35% knew who legally had responsibility, the majority (58%) incorrectly felt it rested with the family.
- #11 Go into small groups and
- #12 Groupwork - 10 mins and we will ask each group to share their comments.
- #13 Background- certainly an acknowledgement that the person remains present but not confident that this was being integrated into the EOLC forom and also addressing staff anxieties- although the staff said they felt comfortable there was little documentation completed.
- #16 10 mins group work and 10 mins to feedback
- #17 Time of day, pace of conversation, environment - cup of tea, get a sense of who she is from interaction/other staff, use of simple language, sensitive v clear language, visual prompts, questions to help the person to explore aspects of EOLC which they may not have specifically considered. Scope of information- Information on dementia- realistic and prepare for future decline, the family role in this journey, support networks, respect their views/opinions, understanding re tx choices and rationale behind decisions, maximise the ways to maximise their ability to communicate and relate to the their mother, keep them informed, paper documentation,. Pros- her condition is currently stable, dementia caused progressive cognitive decline, she may to talk about this aspect of care, meeting HIQA standards, Cons- Sensitive conversation with limited opportunity to develop rapport with patient, may trigger erratic response from family – seem to be focusing on death, upset resident & family.
- #18 10 mins group work and 10 mins to feedback
- #19 Answers may include. When hearing this comments. -Recognise that this comment relates to the person preference’s end of life care – Feel comfortable to hold the moment and explore/ develop a better understanding what she is afraid and don’t know about. Know their limitations – may be more appro for the nurse to review care plan /discuss choice re tx and avoiding hospital admissions. When speaking to Ann - Acknowledge Ann’s fears and reassure her that you have listened/heard her. Inform her of plan ie – feedback to the nurse who may want to further discuss this 2.(a) Understand the Palliative approach, feel comfortable to hold and engage in this EOLC conversation, sensitively engage in conversation, aware of their limitation and their point of contact/dementia champion, aware of their own emotional needs and how to seek support (B) Buddy system or champion, resource folder, training (formal/informal), information and EOLC committees. 3. No professional body, very sensitive area, complex questions can arise, no authorised to write in the notes, don’t think it is their job, knowledge of DPC, sensitive language used.