Planning for the future Project

NHI Conference

April 2014

Deirdre Shanagher & Carmel Collins

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.

POLICY

20012008

2012

2014

2008

2012

2013

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.

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.

FREEDEM VIDEO

http://freedemliving.com/

http://vimeo.com/77213313

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.

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.

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.

• .

Group work.

What are the main challenges in completing ACP with people who have dementia.

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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

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

Case Studies.

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”.

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.

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..”.

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?

“Capturing the moments”

-Maximising one’s capacity

-Skill set of staff

-Integrated into goverence

Resources

Visual prompt cards

EOLC form & Guidance document

Symptom Management

Education

Communication

National Dementia Education Programme

Palliative Care

HFH’s resources

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

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

Stay in contactRegister with database

Many thanks