Sarah Cronin & Deirdre ShanagherDevelopment OfficersThe Irish Hospice Foundation

Dementia Palliative Care: IHF Guidance

DocumentsIAPC Annual Conference

4th December 2015

Outline

•Dementia Demographics• Context of Developing Guidance Documents• Rationale•Methodology• Content•Other IHF resources

Setting the Scene: Dementia in Ireland

Irish Hospice Foundation Programmes

Bereavement

Education &

Research

Healthcare Public Engagement

IHF Healthcare Programmes

• 25% die at home

• 70% die with diseases other than cancer

• 25% die in Residential care

• 43% die in Hospitals

HFH program

me

Journey of

Change program

me

Primary palliative

care program

me

Palliative care for

all program

me

Dementia

ContextLiving and dying well with dementia in Ireland:

2001 2008

2011

2013

2012

2014

People with dementia – what the research tells us…

• Dementia is not recognised as a progressive/ life-limiting illness

• Progression varies significantly from person to person• People with dementia less likely to be referred to Specialist

Palliative care • Less likely to be given pain relief• Palliative care needs poorly recognised and prioritised in

healthcare settings• Can be more likely to undergo burdensome treatments• Training , knowledge and education of staff working in care

settings with people with dementia requires an integrated an interdisciplinary approach (Cahill et al, 2012 :ASI and IHF, 2012)

End- of- life care needs of people with dementia

Care Transitions

Multidisciplinary team involvement

Pain & other

Symptoms

Communication

Loss and bereaveme

nt

Good end of life care for people with dementia Requires additional emphasis

1. Communication skills with people with dementia and families 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 Anticipatory and ambiguous grief and longer trajectory

Challenges of providing a Palliative Care Approach

PALLIATIVE CARE APPROACH All stages

All settingsPerson with dementia, their family, service providers

16

Methodology:• Desktop review of Irish literature on dementia & palliative care• Compared against an Irish review of the educational needs of staff working with dementia

1. Communication skills 6. Hydration & nutrition2. Facilitating discussions on eolc 7. Pain assessment & management3. Advance care planning & directives

8. Ethical decision making

4. Bereavement 9. Medication5. Intellectual disability

Identified Care Domains

Final list of Guidance Documents1.Facilitating discussions about end- of-

life care with the person with dementia

2.Advance healthcare directives and advance care planning

3.Loss and Grief in Dementia4.Hydration and nutrition5.Pain assessment and management6.Ethical decision making7.Medication

Guidance Documents2: Advance care Planning

3: Loss and grief

Draft for consultation

4.11 .15

Draft 1.2016

Background to Development:

Content of Documents:• Each document is structured in the following way:

• Background & Context• Key considerations to inform good practice• Areas for Guidance• Useful resources

• Accompanied by a factsheet

5 Key Considerations:

Areas staff would benefit from guidance:1. Communication Skills

2. Capitalising on informal opportunities

3. Facilitating discussions

4. Hosting formal family meetings

8 Tips for Effective Communication1. Adopt a person centred approach to

communication2. Connect with the person3. Consider the communication environment4. Be aware of your own communication style

and approach5. Use active listening6. Use simple language7. Focus on one question at a time8. Clarify Information and check

understanding

AFIRM Approach to Active Listening(Stirling et al, 2011)

Guidance Document 2: Advance Healthcare Planning and Advance Healthcare Directives

• Themes from literature review:

1. Advance Care Planning & Advance Healthcare Directives with People with Dementia

2. Supported Decision Making3. Professional Uncertainty4. Advance Care planning tools

Guidance Document 2• The five key considerations to inform good practice are as

follows:

• Under Irish law everyone has a right to make their own decisions especially about their body and care.

• Advance care planning is a process that is sensitive and people are not obliged to engage in the process.

• People can change their mind over time so plans and directives need to be revisited with sensitivity

• Staff are familiar with The Assisted Decision Making (Capacity) legislation.

• Staff understand the concept of functional capacity

Guidance Document 2: Advance Healthcare Planning and Advance HealthcareDirectives

• Presumption of Capacity

• Understand• Retain• Weigh• Communicate

Assisted Decision Making Capacity legislation• Functional Capacity Assessment• Time and issue specific

• Levels of Assisted Decision Making:• Decision Making Assistant• Co-decision Maker• Decision Making representative• Power of Attorney• Advance Healthcare Directives

Assisted Decision Making Capacity legislation• Guiding Principles

• Will & Preferences• Least restrictive• Proportionate• Limited in duration• Take into account beliefs and values

Advance Care Planning• … refers to ‘a process of discussion and reflection about goals, values and preferences for future treatment in the context of an anticipated deterioration in the patient’s condition with loss of capacity to make decisions and communicate these to others (RCPI, 2014).

• This process may lead to the formulation of an advance healthcare directive, an advance decision to refuse treatment or to the appointment of a decision making assistant to help interpret a person’s advance preferences (McCarthy et al, 2011).

Advance Healthcare Directives:• … is a document that describes one’s future preferences for medical treatment in anticipation of a time when one is unable to express these preferences because of illness or injury (Roth, 2014). • It is a decision made by a person while he or she has decision-making capacity regarding the medical treatment he or she would wish to receive (and more frequently not to receive) if he or she subsequently loses capacity (McCarthy et al 2011). • Advance healthcare directives can be revoked orally at any time once capacity is present and only become active when capacity is lost.

G. Doc 3: Loss and Grief in Dementia“ Grief is the constant yet hidden companion of Alzheimers

Disease and other related dementias. It is ever-present for the person with dementia and accompanies their families and friends throughout the illness and after death “

(Doka, 2004)

• The issue of loss and grief is one of the most significant issues when supporting people with dementia and their caregivers.

• Losses and grieving occur in different ways at all stages in the dementia journey for the person, for the family and for staff supporting them.

What’s different about grief in dementia?• Serial compounded losses• Ambiguous Loss• Disenfranchised Grief• Anticipatory Grief• Pinch points or transition points

Guidance Document 3: Considerations for Good Practice

1. Grief is a fundamental part of the dementia experience

2. Grief is a dynamic and fluid process

3. Recognise that both the experience of dementia and the experience related to the losses which dementia brings are unique to each person

4. Consider that everyone responds to grief and copes in different ways

5. As a staff member, you will meet a person with dementia and their family through your own experiences of loss and grief

Guidance Document 4:

Guidance Document 5:

Guidance Document 6:

Guidance Document 7:

Information leaflets for people with dementia

Contact InformationSarah Cronin, Dementia Development Officer

sarah.cronin@hospicefoundation.ie

01-6730067