Developing Palliative Care in Dementia Developing Palliative Care in - - PowerPoint PPT Presentation

Developing Palliative Care in Dementia Developing Palliative Care in Dementia Services Services

An Irish Action Research Study An Irish Action Research Study

Research Project Goal Research Project Goal Devise, implement and evaluate Devise, implement and evaluate appropriate palliative care responses appropriate palliative care responses for people with dementia within an for people with dementia within an Irish health care context. Irish health care context.

Palliative Care Structure Palliative Care Structure

Three ascending levels of specialisation: Three ascending levels of specialisation: Level 1 Level 1 – – Palliative Care Approach Palliative Care Approach

• Informed by the principles of palliative care, aims to promote

Informed by the principles of palliative care, aims to promote both physical and psychosocial well both physical and psychosocial well-

• being.

being.

• A vital and integral part of all clinical practice, in hospitals

A vital and integral part of all clinical practice, in hospitals or the

• r the

community, whatever the illness or its stage community, whatever the illness or its stage

Level 2 Level 2 – – General Palliative Care General Palliative Care

• Intermediate level practised by health care professionals with

Intermediate level practised by health care professionals with additional training and experience in palliative care . additional training and experience in palliative care .

Level 3 Level 3 – – Specialist Palliative Care (SPC) Specialist Palliative Care (SPC)

• Core activity is palliative care by an inter

Core activity is palliative care by an inter-

• disciplinary team under

disciplinary team under the direction of a consultant in palliative medicine. Available the direction of a consultant in palliative medicine. Available in in primary care, acute general hospitals and hospices primary care, acute general hospitals and hospices (NACPC)

(NACPC)

(Levels 1 & 2 are referred to as non (Levels 1 & 2 are referred to as non-

• specialist palliative care)

specialist palliative care) (Palliative Care for All 2008)

Rationale for Palliative Care for Rationale for Palliative Care for People with Dementia People with Dementia

• 38,000 people in Ireland have diagnosis of dementia

38,000 people in Ireland have diagnosis of dementia – – expected to rise to 70,000 by 2026 (O expected to rise to 70,000 by 2026 (O’ ’ Shea 2006). Shea 2006).

• People with dementia and families may face complex

People with dementia and families may face complex decisions on care needs, ethical considerations and decisions on care needs, ethical considerations and advance planning advance planning

• Co

Co-

• morbidities

morbidities – – cardiac/respiratory, infections etc may cardiac/respiratory, infections etc may require palliative intervention. require palliative intervention.

• Final phase is challenging and difficult to identify.

Final phase is challenging and difficult to identify.

• Poor pain control and inappropriate treatment at end

Poor pain control and inappropriate treatment at end stage where no palliative intervention. stage where no palliative intervention.

Non Non-

• specialist palliative care has

specialist palliative care has specific role in.. specific role in..

• Symptom Management

Symptom Management

• Personal Care

Personal Care – – dignity/privacy issues dignity/privacy issues

• Physical Care

Physical Care -

• Nutrition

Nutrition

• Psychological Care

Psychological Care

• Bereavement Care

Bereavement Care

• End of Life Care

End of Life Care

• Prompt access to SPC as required

Prompt access to SPC as required

TIMING OF PALLIATIVE CARE in TIMING OF PALLIATIVE CARE in DEMENTIA TRAJECTORY DEMENTIA TRAJECTORY

Large oval indicates timing for non Large oval indicates timing for non-

• specialist palliative care

specialist palliative care Shaded ovals indicate potential timing for SPC Shaded ovals indicate potential timing for SPC

Palliative Care for All 2008 IHF & HSE

Consultation Process Consultation Process… … Consensus Consensus… ….. ..

• Recognition of need

Recognition of need

• Symptom burden

Symptom burden

• Need for comprehensive MDT

Need for comprehensive MDT dementia services dementia services

• Implementation

Implementation plan plan

3 Action Research Projects 3 Action Research Projects – – Establishing Palliative Care within Establishing Palliative Care within Disease Management Frameworks Disease Management Frameworks

• Dementia

Dementia

• Heart Failure

Heart Failure

• Advanced Respiratory Disease

Advanced Respiratory Disease

• Each project will be two year duration

Each project will be two year duration

• Part time project officer appointed to each

Part time project officer appointed to each project. project.

Integrating Palliative Care in Integrating Palliative Care in Dementia Services Dementia Services

Based on the findings Based on the findings

• f 2007/08 Study on
• f 2007/08 Study on

Extending Access to Extending Access to Palliative Care Palliative Care

Partnership Approach Partnership Approach

Palliative care and dementia Palliative care and dementia Action Research Project co Action Research Project co-

• funded by

funded by Irish Hospice Foundation, Irish Hospice Foundation, Alzheimer Society of Ireland and Alzheimer Society of Ireland and Baxter International Foundation Baxter International Foundation with full support of HSE and DoHC with full support of HSE and DoHC

• Co. Clare
• Co. Clare

Management Team Management Team

• Dr. Tom Reynolds
• Dr. Tom Reynolds

Consultant Psychiatrist (Older People) Consultant Psychiatrist (Older People) MB BCh MMedSci ( MB BCh MMedSci (NUI NUI) MD ( ) MD (LOND LOND) )

• Michele Hardiman

Michele Hardiman Assistant Director of Nursing Assistant Director of Nursing RPN, RGN, HDip, MA (Health Management) RPN, RGN, HDip, MA (Health Management)

• Marissa Butler

Marissa Butler RPN, RGN, BSc, HDip, RPN, RGN, BSc, HDip, MSc (Dementia MSc (Dementia-

• Mental Health)

Mental Health)

Misconceptions Misconceptions

Clare People Clare People – – 23.03.2010 23.03.2010

Three Sites Three Sites

• Cappahard Lodge

Cappahard Lodge

• Carrigoran Nursing Home

Carrigoran Nursing Home

• St. Josephs
• St. Josephs

Method of Working Method of Working

• Action Research

Action Research

• Previous Experience

Previous Experience – – Emancipatory PD Emancipatory PD

• Using Practice Development tools

Using Practice Development tools

• Working with a key MDT in each site

Working with a key MDT in each site

McCormack, B. and McCance 2010. Approaches in Person McCormack, B. and McCance 2010. Approaches in Person-

• Centred Nursing.

Centred Nursing. London:Blackwell. London:Blackwell.

Palliative Care is Person Palliative Care is Person-

• Centred Care

Centred Care (Hughes, J. 2005)

(Hughes, J. 2005)

Psychological Needs (Kitwood) WHO definition of Palliative Care Aspects of PC Approach

(Addington Hall)

Attachment Support to Person and Family Importance of sensitive communication Comfort Symptom Control Quality of Life Identity Integration of psychological, social + spiritual aspects Whole Person Approach Occupation Affirmation of Life Respect for Autonomy Inclusion Support to Person & Family Care of Person & Family

Goals Goals

• To find out what people know now

To find out what people know now

• Literature Review

Literature Review

• Feedback to internal facilitators results from

Feedback to internal facilitators results from questionnaires questionnaires

• Prioritise learning needs and palliative

Prioritise learning needs and palliative interventions in a collaborative way interventions in a collaborative way

Data Data

• Approaches to Dementia Questionnaire (Lintern

Approaches to Dementia Questionnaire (Lintern and Woods 1996) and Woods 1996)

• Palliative Care Questionnaire (McDonnell et al

Palliative Care Questionnaire (McDonnell et al 2008) 2008)

• Staff learning needs assessment tool (

Staff learning needs assessment tool (McCarron McCarron & McCallion 2005) & McCallion 2005)

Questionaires administered to Nurses, Questionaires administered to Nurses, Healthcare Assistants and GP Healthcare Assistants and GP’ ’s s

Questionnaires Questionnaires

• N=195 (Nurses and HCA

N=195 (Nurses and HCA’ ’s) s)

• 119 Nursing Q

119 Nursing Q’ ’s and 76 HCA s and 76 HCA’ ’s Q s Q’ ’s s

• Returned=117

Returned=117 60% of overall figure 60% of overall figure

• 80

80-

• Nurses

Nurses 67% 67%

• 37

37-

• HCA

HCA’ ’s s 49% 49%

• N=5 (GP

N=5 (GP’ ’s) s)

• Returned=4

Returned=4 80% 80%

Development/Learning Development/Learning

Nurses: Nurses:

• 35% of nurses had

35% of nurses had undergone undergone development/learning in development/learning in relation to dementia care. relation to dementia care.

• 27%

27% -

• Palliative care

Healthcare Assistants: Healthcare Assistants:

• 58% of Health Care

58% of Health Care Assistants Assistants – – development/learning in development/learning in Dementia Care Dementia Care

• 30%

30% -

• in Palliative Care

Palliative care in Palliative Care

In general do you talk to patients In general do you talk to patients about death and dying? about death and dying?

Healthcare Assistants Healthcare Assistants

• Yes

Yes -

• 5%

5%

• No

No -

• 64%

64%

• Sometimes

Sometimes -

• 28%

28% Competent? Competent?

• Yes

Yes -

• 33%

33%

• No

No -

• 67%

Nurses Nurses

• Yes

Yes -

• 11%

11%

• No

No -

• 43%

43%

• Sometimes

Sometimes – – 36% 36%

• Seldom

Seldom – – 1% 1% Competent? Competent?

• Yes

Yes – – 53% 53%

• No

No – – 34% 34%

• Sometimes

Sometimes – – 4% 67% 4%

In general do you talk to relatives about death In general do you talk to relatives about death and dying of a loved one? and dying of a loved one?

HCA HCA’ ’s s

• Yes

Yes-

• 5%

5%

• No

No-

• 64%

64%

• Sometimes

Sometimes-

• 28%

28% Competent Competent

• Yes

Yes-

• 38%

38%

• No

No-

• 54%

54%

• Not my Job

Not my Job-

• 2.5%

2.5%

• Sometimes 2.5%

Nurses Nurses

• Yes

Yes – – 39% 39%

• No

No – – 14% 14%

• Sometimes

Sometimes – – 40% 40% Competent Competent

• Yes

Yes – – 65% 65%

• No

No – – 35% 35% Sometimes 2.5%

Referral to SPC Referral to SPC

Nurses Nurses

• Yes

Yes – – 55.6% 55.6%

• No

No – – 35.2% 35.2%

• Not my job

Not my job – – 3.7% 3.7%

• Not Always

Not Always – – 3.7% 3.7%

• Not Sure

Not Sure – – 1.9% 1.9%

Future Future

• Facilitate Dementia Learning/Development

Facilitate Dementia Learning/Development

• Facilitate Dementia Palliative Care

Facilitate Dementia Palliative Care Learning/Development Learning/Development

• Link closely with local hospice

Link closely with local hospice

• Implement Palliative Interventions

Implement Palliative Interventions

Potential Outcomes Potential Outcomes

• Further clarity on nature, potential and timing for

Further clarity on nature, potential and timing for palliative interventions for people with dementia for palliative interventions for people with dementia for service users, family members and staff. service users, family members and staff.

• To frame a model of support and intervention for

To frame a model of support and intervention for implementation in other services. implementation in other services.

• Education material for key personnel in delivering

Education material for key personnel in delivering palliative responses and information materials for palliative responses and information materials for service users, family members and staff. service users, family members and staff.

• Guidelines for the introduction of palliative

Guidelines for the introduction of palliative interventions and referral to specialist palliative care. interventions and referral to specialist palliative care.

• Identification of future research needed in policy and

Identification of future research needed in policy and practice in this area. practice in this area.

Palliative Care for All Palliative Care for All

Success depends on collaboration! Success depends on collaboration!

Thank You for Thank You for Listening Listening

Marissa Butler Marissa Butler Marissa.butler@hse.ie Marissa.butler@hse.ie