‘Mouth matters in palliative care’ Hilton Doubletree, Dundee 1 October 2015 Elaine MacLean, Palliative Care Adviser, within the Health Improvement Team

2015 Scottish funding in place for a new ‘Strategic Framework for Action for Palliative and End of Life Care’ aiming to be published in the later this year

Palliative care Life limiting illness, can be constantly progressing - well one day, then condition can change quite suddenly Carers are in a unique position because they spend longer periods of time with the person can observe changes or symptoms “It is natural to die as to be born Francis Bacon ( ) British statesman and philosopher”

End of life care Guidance by NHS Scotland (December 2014) target audience health and social care Caring for people in the last days and hours of life The ‘Guidance and its 4 principles’ shall be the ‘Framework’ for end of life care for further planning and development at a local level across Scotland

Section 1: Principles 3. Each person’s physical, psychological, social and spiritual needs are recognised and addressed as far as possible agreed goals of care should be documented and reviewed at least daily preferred place of care discussions should be documented from meetings symptoms should be assessed & intervention recorded seek help from specialist palliative care religious and spiritual needs to be identified

Section 2: Three Specific Areas of Importance 2.1 Hydration and / or Nutrition Always review / good mouth care essential / reasons for decisions or changes need to be explained to the family and carers 2.2 Recognising the uncertainty of a diagnosis of dying 2.3 Communication with people and families and between staff

Scottish Palliative Care Guidelines Oral health care guideline Healthcare Improvement Scotland and Scottish Partnership for Palliative Care

Mouth matters: Dry mouth Side effect of treatment? Side effect of medication? Breathing through the mouth when breathless? Poor fluid intake?

Palliative care approach: Ask if the person is having problems – how does their mouth feel? Observe Consider drug history – some drugs can cause dryness Daily oral inspection as part of care?

Mouth matters: Mouth ulcers Check dentures are they rubbing / food trapped Consider if there has been weight loss Badly fitting dentures - may need to be realigned

Mouth matters: Thrush (candida) White patches on the side of the mouth Or tongue red and glossy May occur in people who are diabetic, people on steroids, or taking antibiotics

Infections Fungal infection e.g candidiasis Viral infection e.g. herpes simplex Reassure the person and family Provide explanation of symptom and how you are going to help

Mouth care for people with palliative care needs Key principles Assess Plan regular effective mouth care Confidence to refer Identify urgent referrals For people at home: If person on chemotherapy or radiotherapy they need careful monitoring pre and post treatment Maybe salivary gland dysfunction or mucosal changes

At end of life: All about the person Key areas are observation for appearance of lips – dry? cracked? Breath – bad? Dry mouth, making it difficult to speak? Difficulty swallowing?

How to help at the right time At end of life – keep mouth moistened Frequent mouth care Explain process to family Reassure the person and the family Be aware of your own feelings “At my age I do what Mark Twain did. I get my daily paper, look at the obituaries page and if I’m not there I carry on as usual. Patrick Moore ( ) British astronomer and TV presenter”

Symptom management Consider why person is in pain? Tooth decay / ulcer / bite Seek dental opinion Oral mucositis Persistent pain - seek medical advice outhcarewww.nhsinform.co.uk/palliativecare/symptomcontrol/m outhcare

RCN Guide Getting it right every time Fundamentals of nursing care at end of life The seven Ps On which one is – Provide – good mouth care regularly, whether eating and drinking or not

Web links: Palliative care course information –with revised ACP facilitators pack on the ACP toolkit section of the website Quotes in slides from Public health and death & dying in England

Web information on palliative and end of life care 1) Information for patients and families NHS inform have a palliative care zone: 2) The bereavement zone on NHS inform: 3) SPICT Tool (prognostic indicator)