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.
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
Group Work 5 minutes discussion When would you consider a person with dementia is potentially nearing end of life 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 Holistic Assessment for individuals & their families
What do we mean by holistic assessment 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
Discuss what symptoms this person may experience Physical Psychological Hearing & Visual problems Depression & low mood Pain & general discomfort Poor sleep pattern Nausea & Vomiting Poor appetite & swallowing Disorientation/confusion difficulties Anxiety /fear Respiratory Problems Frustration Skin problems Constipation & infections
Social Spiritual & religious Hearing & visual impairment Hope & creativity Disorientation To be listened to What's happening to them Receive respect, honesty & Resistant to intervention truthfulness Lack of insight Religious practices, values, cultures & beliefs associated with dying.
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
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 ‘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
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 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. 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
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). 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.
Treatment Reassurance Re-positioning Consider reversible options – treat infection, constipation, dehydration, medication review Medication maybe appropriate
Clear Communication, Documentation & Evaluation
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.
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 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
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
Oral Thrush Most common fungal infection in palliative care population Predisposing factors Antibiotics Steroids
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
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 Laxatives
Softeners Stimulants Combination Lactulose – patient needs Senna & Bisacodyl Co-danthramer - can to be well hydrated- Direct stimulation of stain urine red and retains water in the gut. myenteric nerves to can burn skin. Do not Action 1-2 days induce peristalsis. use if patient is Docusate Sodium Reduce absorption of incontinent increases water water in gut. penetration of stool Action Do not use if colic or 1-3 days obstruction present Laxido/Movicol hydrates harden stool, decrease time in colon & dilates bowel wall to trigger defaecation reflex (dissolve125mls) Action 1- 2 days
Respiratory Secretions
Common symptom at end of life
Distressing for resident family and carers
Are oral antibiotics appropriate
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. Pharmacological treatment Subcutaneous medication Hyoscine Butylbromide or Hyoscine Hydrobromide
Low dose Diamorphine
Midazolam 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’