Communication is Critical

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2 Communication is Critical Individuals with end stage dementia may experience high levels of suffering Over 60% will receive sub optimal end of life care Mitchell et al (2009) Sampson et al (2006) Assessment of symptoms can be complex due to Cognitive impairment & co-morbidities Individual behaviour, values & beliefs Families interpretation of symptoms & understanding of disease trajectory Health & social care staffs interpretation of symptoms.

3 Decision Making Early discussions about decisions for care & treatment are essential Clear factual documentation - ambiguous documentation can lead to inappropriate intervention and miscommunication Best interest consider who should attend plan early

4 Group Work 5 minutes discussion When would you consider a person with dementia is potentially nearing end of life

5 Indicators of End Stage Dementia Care Requires all care for activities of daily living Unable to weight bear/ requires a hoist Urinary & faecal incontinence No consistent meaningful conversation Reduced dietary & fluid intake - increased risk of aspiration Weight loss Recurrent infections Scratching or picking at skin Restlessness Rigidity, facial grimacing, teeth grinding

6 Holistic Assessment for individuals & their families What do we mean by holistic assessment

7 Co- morbidities impacts on symptom management Diagnosis Later stages of vascular dementia Two admissions for chest infection Weight loss Medical history includes CVA (result contracted limbs) Hypertension Chronic renal disease Anxiety & depression Other factors Poor sight, and difficulty with hearing Diminished dexterity in hands

8 Discuss what symptoms this person may experience

9 Physical Hearing & Visual problems Pain & general discomfort Nausea & Vomiting Poor appetite & swallowing difficulties Respiratory Problems Skin problems Constipation & infections Psychological Depression & low mood Poor sleep pattern Disorientation/confusion Anxiety /fear Frustration Social Hearing & visual impairment Disorientation What's happening to them Resistant to intervention Lack of insight Spiritual & religious Hope & creativity To be listened to Receive respect, honesty & truthfulness Religious practices, values, cultures & beliefs associated with dying.

10 Pain Difficult to interpret Assessment can be challenging Uncontrolled pain impacts on quality of life & moving & handling Importance of communication, good care planning & team work Concerns strong analgesia causes increased sedation & premature death

11 Recognised Pain Assessment Charts for people with dementia It is crucial staff consider a holistic approach to pain assessment Pain tool chosen needs to be effective for individuals no two people are the same. Communication & training is critical for care team & relatives in how to use the tool Abbey Pain Scale PAINAD (Pain Assessment in Advanced Dementia) Communication, Education & Documentation

12 Pain is whatever the patient says it is and exists whenever they says it does BUT Many patients may not be able to:- Communicate pain Identify location of pain Describe type of pain Severity of pain

13 Types of Pain (will influence medication prescribed) Soft Tissue Throbbing/tender/ache Oedema Heavy/tight Nerve Throbbing/burning/toothache Bone Gnawing/aching Colic Cramping/exhausting/gripping

14 Principles in Managing Pain Right Drug by the Ladder Right dose by mouth/patch/injection Right Time by clock Clear documented evidence of description of pain Clear documented evidence of outcomes from intervention.

15 Restlessness/agitation Unable to get comfortable Scratching or picking at skin Varying degrees of restlessness - shouting, moaning twitching, jerking, fidgeting, irregular breathing, plucking at clothes/ sheets Hallucinations

16 Causes Uncontrolled Pain Dyspnoea Retained secretions Constipation Urinary retention Drugs many drugs can cause cognitive decline, agitation, hallucinations & abnormal behaviour. Rationalise drug treatment. Organ failure (Renal, cardiac or liver).

17 Causes Metabolic uraemia, hypercalcaemia, hypoglycaemia, hypoxia from anaemia. Infections UTI, respiratory infections treating in some circumstances may be helpful in reducing terminal restlessness Cerebral primary or secondary tumours Anxiety unresolved family conflict, denial, fear, spiritual distress. Withdrawal of alcohol, narcotics or nicotine if a heavy smoker.

18 Treatment Reassurance Re-positioning Consider reversible options treat infection, constipation, dehydration, medication review Medication maybe appropriate Clear Communication, Documentation & Evaluation

19 Medical treatment Sedation often there is still a need for sedation. Benzodiazepines (Lorazepam, Diazepam, Midazolam) reduce anxiety, sedate, relax muscles and suppress seizures If agitation is associated with hallucinations, paranoia, psychosis use antipsychotic drugs (Haloperidol) sometimes in conjunction with benzodiazepines.

20 Nausea Identify the cause as this will affect treatment Metabolic Renal Failure, Chest & Urinary Tract Infections, Dehydration Organic Constipation, Bowel obstruction Medication Psychological anxiety Causes often unknown in EoLC

21 Non pharmacological treatment Environmental factors posture, fresh air, appropriate food, correct position. Small appetising meals (think after taste) Good oral hygiene Good bowel care are laxatives effective or required?? Diversional treatment- gentle music Clear Communication, Documentation & Evaluation

22 Pharmacological treatment If cause is gastro-intestinal poor gastric emptying /reflux try metoclopramide, Domperidone If cause is metabolic try haloperidol, Levomepromazine If hyperacidity consider antacid, omeprazole, lansoprazole If cause is psychological try lorazepam Evaluate Regularly

23 Most common fungal infection in palliative care population Predisposing factors Antibiotics Steroids Oral Thrush

24 Oral Thrush Treatment Needs to be Nystatin suspension 5mlprescribed x 4 per day. Important that solution held in mouth and fluids not administered directly after Fluconazole

25 Constipation often Secondary effects of advanced disease Poor dietary intake Poor fluid intake Reduced immobility Poor, unfamiliar toileting arrangements Lack of privacy and dignity Confusion Comprehensive Assessment is required

26 Laxatives Softeners Stimulants Combination Lactulose patient needs to be well hydratedretains water in the gut. Action 1-2 days Docusate Sodium increases water penetration of stool Action 1-3 days Laxido/Movicol hydrates harden stool, decrease time in colon & dilates bowel wall to trigger defaecation reflex (dissolve125mls) Action 1-2 days Senna & Bisacodyl Direct stimulation of myenteric nerves to induce peristalsis. Reduce absorption of water in gut. Do not use if colic or obstruction present Co-danthramer - can stain urine red and can burn skin. Do not use if patient is incontinent

27 Respiratory Secretions Common symptom at end of life Distressing for resident family and carers Are oral antibiotics appropriate

28 Nursing care Turning the patient s body gently onto their side or turning the head to the side. Reassure family. Stop any fluids if not already done if high risk of aspiration. Maintain moist clean mouth Apply lip balm. Suctioning not recommend since this can increase distress and loosen more secretions.

29 Pharmacological treatment Subcutaneous medication Hyoscine Butylbromide or Hyoscine Hydrobromide Low dose Diamorphine Midazolam

30 Dame Cicely Saunders You matter because you are you. You matter to the last moment of your life and we will do all we can, not only to help you die peacefully, but to live until you die