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Planning for the future Project
1. Planning for the future Project
NHI Conference
April 2014
Deirdre Shanagher & Carmel Collins
2. Plan.
-Overview of Dementia Palliative Care In Ireland.
-Identify the challenges in implementing advanced
care planning for people with dementia.
-Describe the Planning for the Future Project.
-Case studies.
4. WHAT ARE THE GAPS?
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 people with 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.
7. What is Advanced Care 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.
• .
11. What are the main challenges in
completing ACP with people who
have dementia.
??
?
??
12. Planning for the Future 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 discussion on 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
15. Case Study 1.
Ann has 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 steps could 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..
Ann has 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 would you 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?
20. Resources
Visual prompt cards
EOLC form & Guidance document
Symptom Management
Education
Communication
National Dementia
Education Programme
Palliative Care
HFH’s resources
21. Irish Dementia Projects.
Improve society’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.
Development of 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
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.
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.
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.
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.
-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.
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?
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.
Go into small groups and
Groupwork - 10 mins and we will ask each group to share their comments.
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.
10 mins group work and 10 mins to feedback
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.
10 mins group work and 10 mins to feedback
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.