6 STEPS to Success in End of Life Care for residential homes Workshop 5

1. 6 STEPS to Success in End of Life Care for residential homesWorkshop 5 Pam Williams Clinical Nurse Educator in End of Life Care June 2011

2. Objectives • Recognise the difference between an appropriate & inappropriate admission to hospital at end of life • Recognise the point where the resident enters the dying phase • Review advance care planning when the LCP is commenced • Know how to care for relatives, significant others, staff and other residents with dignity when a resident enters the dying phase. • Relate to the end of life care policy

3. A Case Study • Jim was 79 and had dementia. • He also had lung cancer which was not being treated. • Recent deterioration, weight loss, not eating well, recent hospital admission for infection. • Grade 3 pressure sore on right heel which is not healing

4. Case study continued • Macmillan nurse has spoken to family but no recent request made by home for support. Jim was stable at last contact. • Family wishes documented but not shared with SPA/OOH- hence no special notes. • Jim not responding and oxygen saturations 77%. • Call to SPA and 999 • Patient died in hospital 3 days later.

5. Significant Event analysis • What went well? • What did not go well? • What could have been done better? • What would you have done differently?

6. What is an appropriate hospital admission at end of life

7. PLANNING JIMS CARE PATIENT NAME; NHS NUMBER; DOB ; DATE; CARE PLAN; The patient is approaching end of life;

8. WHAT CAN SUPPORT DECISION MAKING AT END OF LIFE? • ACP- has this been revisited? • Out of Hours (OOH) handover • GP Review if appropriate • DN support • Holistic assessment • Communication with acute sector • Communicate with other appropriate professionals- SPC team

10. DIAGNOSING DYING PAM WILLIAMS JUNE 2011

11. Why is it important? • Permits appropriate treatment • Prevents inappropriate treatment • “Missed diagnosis” • leads to conflict within the clinical team • leads to conflict with patients and relatives

12. End of Life Care Model

13. Last Days of Life Early recognition of dying is vital Allows time to consider reversible causes and appropriateness of action plan. Allows time to talk to all involved (patient, professionals and family) and agree a plan of care (ACP,DNAR) Prevents crises, inappropriate hospital admissions or treatments Patients and relatives have opportunity to make fully informed choices about future

14. Diagnosing dying is difficult to do. Little experience with death with reduced number of home deaths. Doctors in particular have a big blind spot over admitting “failure” Fear of litigation? Unpredictable trajectories

15. Dying Trajectories Sudden death may occur in all types of disease Excluding reversible causes is difficult in all forms of disease http://www.bioethics.gov/images/living_well_graph.gif

16. Roads to death THE DIFFICULT ROAD Uncontrolled symptoms Restless Psychological Distress Confusion Normal Delirium Fatigued Drowsy Agitation THE USUAL ROAD Semicomatose Comatose Dead

17. How do we Diagnose Dying? Pattern recognition • Common signs and symptoms • ALL causes – many similarities • Cancer – predominantly fatigue • Respiratory disease • Cardiac failure • Dementia • All on a background of known disease

18. Diagnosing Dying Profound weakness Bedbound Increasing drowsiness/ semi-comatose Unable to tolerate oral medications Minimal food or fluid intake Disorientated Muscle jerks Gaunt physical appearance Poor colour Poor peripheral perfusion Increased sweating

19. LUNG CONDITIONS Multiple previous hospital admissions with deteriorating condition Heart failure/kidney failure Breathless on minimal or no exertion On optimum medication No option of ventilation No obvious reversible cause

20. Heart Failure • Multiple previous hospital admissions with deteriorating condition • Deteriorating kidney function • Swelling to ankles etc • Breathless on minimal or no exertion • On optimum medication • No obvious reversible cause

21. ADVANCING & END STAGE DEMENTIA • Aims of the session; • Recognising end stage dementia • Interventions • Misconceptions • Solutions Pam Williams Clinical Nurse Educator End of Life Care November 2010 Thanks to Dr Rebecca Bancroft, Consultant Geriatrician, RLUTH, for sharing her work on which this ppt is based

22. DEFINITIONS • We use the term Dementia to mean ‘memory loss’ • An umbrella term for diseases that cause this; • Alzheimers • Vascular • Lewy Body • Picks • CJD

23. DEFINITIONS • The word dementia comes from the Latin ‘demens’ • Without a mind • References date back to Roman texts • French revolution - part of Napoleonic Law • 'There is no crime when the accused is in a state of dementia at the time of the alleged act'

24. SOME FIGURES • Dementia affects about 5% people over 65 years • Rises to 20% aged over 80 years • 36% live in a Care Home • Approx 820,000 people in the UK have dementia • Likely to increase X 2 in the next 20 years • Current cost £17 billion • More than cancer, stroke or heart disease • ‘A global health and social care crisis’

25. WHAT IS THE MOST COMMON FORM? • Alzheimer Dementia is the commonest cause of dementia (~50% cases) • 25% Vascular dementia • 25% Mixed pathology • increasingly accepted (may be higher)

26. MORTALITY RATES • High annual mortality rates • 50% in NH • 25% in RH • Majority of patients with dementia enter 24 hour care before they die ~76% • Average length of stay 18 months

27. SURVIVAL RATES • Mean survival is 4.5 years • Range 3.8 - 10.7 years • Longer survival with younger age of onset • Women survive longer than men

28. ALZHEIMERS

29. VASCULAR DEMENTIA

30. PROGNOSIS • Mortality rates for patients with dementia much higher than for age Mean x 2.6 • We are very poor at estimating prognosis in patients with dementia • 1% NH residents with dementia thought to have prognosis < 6 months • 70% dead in 6 months Dewey et al. Int J Geriatr Psychiatry 2001; 16: 751-761. Mitchell et al. Arch Intern Med 2004; 164(3):321-326

31. Dementia increases mortality by x approx 6 • Pneumonia is a common cause of hospitalisation • Mortality for patient with dementia & pneumonia is 53% dead within 6 months • Compared with 13% for the cognitively intact • Increases with severity of dementia • Aspiration, weight loss • 43% survivors develop a recurrence within 1 year • mortality for patient with dementia & hip fracture is 55% • Compared with 12% for the cognitively intact

32. ADVANCING DEMENTIA • Clinical indicators that patients with dementia are approaching the end stages of their disease process (ALL of these): • Unable to walk without assistance • Urinary and faecal incontinence • No consistently meaningful verbal communication • Unable to dress without assistance • Barthel score <3 • Reduced ability to perform activities of living

33. PLUS ANY 1 OF THE FOLLOWING; • 10% weight loss in previous 6 months without other cause • Kidney or urinary tract infection (uti), recurrent fevers • severe pressure ulcers • reduced oral intake/weight loss, • aspiration pneumonia

34. ADVANCED DEMENTIA • Common complications include: • Pneumonia (41%) • Recurrent infections(53%) • Eating problems (86%) • All are predictors for high 6 month mortality (~50%)

35. COMMON INTERVENTIONS INCLUDE; • Hospital admission / attendance • 70% due to pneumonia • Tube feeding • IV therapy

36. HOSPITAL ADMISSION • Transfer from NH to hospital results in decline of psycho-physiological functioning including: • Mobility and transfers • Toileting • Feeding • Grooming • None of these functions improve significantly back to baseline at discharge

37. AND….. • Evidence that hospitalisation is not necessary for treatment of pneumonia in NH residents • Immediate survival and mortality rates similar for treatment provided in NH or hospital • Long-term outcomes better in residents treated in the NH • 6 week mortality • 39.5 % in hospitalized • 18.7% in non-hospitalized residents • no significant differences between the 2 groups before diagnosis

38. ANTIBIOTICS • Effective in single episodes of infection in NH residents with dementia • Limited by recurrence of infections in advanced dementia • Antibiotic therapy does not prolong survival in residents with severe dementia • unable to communicate and unable to walk alone / with assistance etc

39. DYSPHAGIA • Numerous causes – some reversible • Needs thorough assessment • Was the onset acute or gradual? • ALL patients require SALT and dietetic assessment

40. SUDDEN ONSET - CAUSES • Current illness i.e. UTI • Acute event i.e. stroke • Sore mouth/ill fitting teeth • Infection i.e. oral thrush • Medication i.e. causing nausea, sedation • Pain

41. GRADUAL ONSET - CAUSES • Previous stroke • Additional neurological disorder • Depression • Mouth/throat cancers etc • Progression of dementia

42. SWALLOWING PROBLEMS • AKA DYSPHAGIA • Swallowing problems are very common in patents with dementia • marker of advanced dementia and disease progression • Hospital admission due to dysphagia in patients with advanced dementia is not appropriate • Tube feeding in patients with advanced dementia is not beneficial

43. Artificial Nutrition and Hydration • No research on the effectiveness of tube feeding • However, we do know that tube feeding in dementia does not • Prevent aspiration pneumonia • may increase its incidence • Prevent the consequences of malnutrition • Increase survival • Prevent or improve pressure ulcers • Reduce the risk of infection • Improve functional status • Improve comfort of the patient

44. PEG FEEDING • Average survival 59 days in patients who had PEG (n=23) • 60 days in patients who did not undergo PEG placement (n= 18)

45. NUTRITION • Maintaining nutritional health in advanced dementia may not be possible • However, important to try to maintain or slow deterioration to preserve quality of life • Lower BMI associated with an increased incidence and severity of behavioural problems

46. MANAGEMENT • Food first’ approach • Begins early in the disease • Based on previous / current preferences • Constant availability • Note frequent waking at night • May need 6 small meals / day • Full fat, full sugar • Food fortification • Supplements

47. MANAGEMENT CONT… • Careful hand feeding • Method of choice, even if ‘unsafe swallow’ • Maintains human contact and social interaction • Provides stimulation and comfort • Provides/ maintains quality of life • Time consuming • Dependent on relationship between feeder and patient

48. OTHER HELPFUL TIPS • Use modified consistency food and fluid • Highly flavoured • Ice cold or hot • Cold drink before food • Alternate sweet and savoury • Verbal prompts important • Minimise distraction • Separate flavours and textures

49. Medication • High risk group for chronic renal failure • Usually undiagnosed • Medication should be lower doses • Inappropriate/unnecessary meds should be discontinued and regularly reviewed • Change to more suitable format • Prepare for swallow to diminish and plan alternatives i.e. pain relief, epilepsy etc

50. THE CASE FOR FLUIDS…. • More comfortable if hydrated? • Dehydration can cause delirium, and muscle jerks • May relieve thirst? • More likely to be opioid toxic if dehydrated • Rarely prolongs the dying process!