dementia and palliative care care at the end of life for patients with dementia regina mc quillan,...
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Dementia andPalliative Care
Care at the end of life for patients with dementia
Regina Mc Quillan, Palliative Medicine Consultant
Dementia in Ireland
38,000 people with dementia in Ireland 75% living at home, many without formal
diagnosis 50% of care provided by family
Alzheimer’s Society of Ireland; National Economic and Social Forum
Dementia
A progressive fatal illness Live with illness for years, not months Patients live with it Family live with it Carers live with it Adaptation to changes by patient, family and
carer
Adaptation to changes
Information
What is happening? What is the diagnosis? What are the likely changes in next months,
years?
Appropriate equipment
Access to OT and physiotherapy assessment
Practical help
Home-help Carer at home
Specialist help
Dementia specialist Psychiatry of Old Age Care of the Elderly Specialist Palliative Care
End of life-Last year of life
Difficulty prognosticating General decline over months/years Acute episodes with recovery, but maybe not
to premorbid level
Gold Standard Framework Prognostic Indicators for Dementia
www.goldstandardsframework.nhs.uk
GSF Dementia-general principles
Multiple comorbidities Karnofsky Performance Status <50 General physical decline Weight loss >10% Albumin <25g/l
GSF Dementia-primary indicators
Assistance to walk Double incontinence No verbal communication Cannot dress unaided Barthel<3
GSF Dementia-secondary indicators
Pyleonephritis/UTI Pressure sores grade III/IV Recurrent fevers Reduced oral intake Aspiration pneumonia
What to do?
Advance Care Planning
What does the patient want? What does the family believe the patient
would want? (not just what the family wants) What to health care professionals believe is
clinically appropriate?
Advance Care Planning
A discussion, a processNot a tick box exerciseOften not considered in dementia when patient
still competentNot legally bindingNeeds review as patient condition changes,
including if patient stabilizesRequires patient/family education re nature of
dementia
Physician Orders for Life Sustaining Treatment (POLST)
CPR Comfort measures only Limited additional measures eg oral
antibiotics, iv antibiotics, parenteral fluids Full treatment including ICU etc
Beaumont Pilot Project
Based on POLST No proxy decision maker role in Ireland Anticipatory prescribing for potential
symptoms
Specific Problems
Symptom management
Assessment- patient report, patient history,
patient observation including behaviour changes, assessment tools-4 point verbal rating scale
Treatment-may be best guess, if assessment not clear
Evaluation of intervention-as part of assessment, and to see value of treatment
Symptom assessment tools
Four point verbal rating scale is the best Abbey Pain Scale
www.cityofhope.com
Feeding
Anorexia Dysphagia Weight loss
Part of the natural history of dementia
Artificial feeding
No evidence of benefit of quality or quantity of life
End of life care in dementia
A progressive illness Family role as ‘voice’ for patient Family/patient education Staff education Staff networking-OT, physio, psychiatry,
specialist palliative care, spiritual care Avoid the ‘bank holiday Friday’ crises
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