DSCIDC Dementia and End of Life Seminar

8th May 2009

Integrating Palliative Care within

Dementia Services

Based on the findings

of 2007/08 Study on

Extending Access to

Palliative Care

Angela Edghill,

Irish Hospice Foundation

Context of Study

• To examine the palliative care needs of people with life-limiting diseases other than cancer

• Initial focus on COPD, dementia and heart failure

• Identify how the palliative care model can be extended to these patient groups within Irish health care

Policy context for palliative care and non-malignant diseases

• DOHC 2001 report on palliative care needs of patients with non-malignant disease

• “The promotion of the palliative care approach is appropriate for all non-cancer patients.

• A subset of patients with multiple medical problems or complex palliative care needs will benefit from Specialist Palliative Care.”

Report of the National Advisory Committee on Palliative Care 2001

What is palliative care?

Palliative care is an approach that improves the quality of life of patients and their families facing problems associated with life threatening illness, through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other symptoms that may be physical, psychosocial and spiritual. (WHO)

Palliative Care Principles

• Focus on quality of life• Maintaining good symptom control• A holistic approach which takes into account the

person’s life experience and current situation• Care that encompasses the patient and those

who matter to them

• Open and sensitive communication with patients, carers and professional colleagues.

StructureThree ascending levels of specialisation: Level 1 – Palliative Care Approach• Informed by the principles of palliative care, aims to

promote both physical and psychosocial well-being.• A vital and integral part of all clinical practice, in hospitals

or the community, whatever the illness or its stage Level 2 – General Palliative Care • Intermediate level practised by health care professionals

with additional training and experience in palliative care . Level 3 – Specialist Palliative Care (SPC) • Core activity is palliative care by an inter-disciplinary

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

(Levels 1 & 2 may be called non-specialist palliative care)

Context for palliative care and dementia

• Palliative care in dementia is of singular importance (Vision for Change 2006 DoHC)

• Dementia care should incorporate palliative care from the time of diagnosis until death. (NICE UK 2007)

• Principles of person-centred dementia care mirror broad principles of palliative care. (Hughes (2005), McCarron (2008))

Rationale for palliative care for people with dementia

• 38,000 people in Ireland have diagnosis of dementia – expected to rise to 70,000 by 2026.

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

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

• Final phase is challenging and difficult to identify.• Poor pain control and inappropriate treatment at end

stage where no palliative intervention.

The challenges …for dementia services

• Delivering on Levels 1 and 2 palliative care

• Need for additional training and support

• Recognising the terminal phase of dementia

• Dying from dementia/dying with dementia

• Timing of palliative care

• When to refer to SPC

Where palliative care approach has not been taken for people with

dementia…

Studies show

• Antibiotics were inappropriately used in the last days of life and

• Analgesics less frequently prescribed than for the general population

Collaboration

• Joint approach by dementia care team and SPC can address reservations about introducing palliative care

• Developing mutual understanding and respect of the skills of each team can be first step

• Collaboration does not always require extra resources (Johnson and Haughton 2006)

Palliative Care and DEMENTIA

Palliative Care required for • Symptom management, particularly pain • Ethical issues surrounding provision of personal care and

invasive procedures• Bereavement (including anticipatory grief) for all• Advanced Directives/Power of Attorney (Abbey 2006)

• Enabling dying with dignity and in place of patient’s choosing• Palliative care should be available from time of diagnosis

until death (NICE UK)

Introducing palliative care in dementia pathway is particularly challenging due to the duration of the disease and the progressive inability of individual to communicate and participate in decision making about their care

Non-specialist palliative care has specific role in..

• Pain, symptom management, anxiety and depression • Management of issues presenting relating personal care

including nutrition, hydration and hygiene.• Increasing patients and family members understanding

of the disease trajectory • Support relating to advance planning and future

treatment decisions, • Community and home care support to address

increasing disability• Bereavement support throughout the disease trajectory • Prompt access to SPC as required

Timing of palliative care in dementia trajectory

Possible “triggers” for SPC intervention

Acute medical event leading to

• increase in intensity of symptoms: e.g. pain, dyspnoea, terminal agitation that cannot be managed by referring team

• Assistance with introduction of advance directives or treatment decisions

Consultation processControversy

• Timing

• Eligibility Criteria

• Levels of SPC access

Consultation process…Consensus…..

• Recognition of need • Symptom burden• Need for comprehensive

MDT dementia services• Implementation

plan

The realities….. • Clarity required

on the role of

palliative care in dementia• More education

and support• More staffing• More leadership• More policy • Not the only priority!

What would assist

development here?

The realities…….

• The majority of palliative care needs can be addressed from within dementia services or provided by

- GPs– Community Nursing Staff– Allied Health Professionals– Social Workers– Care StaffThis care is just a small part o

f

work load and very few have

formal training in palliative care

What do dementia services need to assist development here?

Realities – some progress!

Level 1 and Level 2 Palliative care

• Intellectual disabilities services

• Dementia-specific services - some staff have additional training in palliative care

Views of Dementia teams re referrals to SPC

• Want to remain involved in the ongoingcare of the patient• Referral prompted following assessment by consultant• Support in managementof symptoms where theyhave become intractable• Assistance with advance care planning, certain treatment decisions, andethical issues

Commitment

Recognition

Raised awareness

What happens next…..

1. Forum in March: ‘Delivering on Palliative Care for All’2. Links with other life- limiting disease groups3. Education – formal and informal Submission to be sent to HSE ETR Information website portal; Quarterly Communiqué Education Seminar in autumn A summary booklet on the key findings.

4. Dissemination and Awareness 5. Enhance service responses

from Disease Management Framework 3 Action/Exploratory Research Projects

HSEIHFSPC

DISEASE SPECIALISTS

EDUCATION PROVIDERS

VOLUNTARY ORGANISATIONS

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

• Dementia • Heart Failure

• Advanced Respiratory Disease

Each project will be two year duration Part time project officer appointed to each

project.

Partnership approach

Dementia project co-funded by

the Alzheimer Society of Ireland

All projects have links/support from HSE PCCC and NHO.

Balance of funding from Irish Hospice Foundation and

Baxter Foundation

Site Selection Process

• Locations to be decided following invitation for expressions of interest in April – closing date 11th May.

• Community residential units and SPC will be key partners in Dementia research

• Local management team to be established to oversee the project

Outcomes • Clarity regarding nature of and timing for level 1 &

2 palliative interventions for people with dementia• Identify how these interventions can be included in

routine assessment and care of people with dementia

• Development of guidelines for introduction of palliative interventions and referral to specialist palliative care

• Development of education materials to assist key personnel in delivering palliative interventions

Palliative Care for All

Success depends on collaboration!

Palliative Care for All

Thank you….

Questions?

www.hospice-foundation.ie

angela.edghill@hospice-foundation.ie