6 STEPS WORKSHOP 1

1. 6 STEPS WORKSHOP 1 Discussions as the end of life approaches Pam Williams Clinical Nurse Educator End of Life Care April 2011

2. Today’s objectives • Identify how the NW End of Life Care model & tool supports an End of Life Register • Identify when is the correct time to undertake end of life discussions, considering communication and capacity barriers

3. 1 2 3 4 5 Advancing disease Increasing decline Last Days of Life First Days after Death Bereavement 1 year 6 months Death 1 year The North West End of Life Care Tool

5. ADVANCING DISEASE; change of residence, requiring more assistance, new diagnosis, depression, increased hospital admissions, weight loss, symptoms. • INCREASING DECLINE; decreased appetite, withdrawn, • Increasing weakness and frailty, not strong enough to attend outpatients, decreased mobility, sleeping more often, increased interventions required, gaunt, lack of concentration, fatigue, weight loss. • LAST DAYS OF LIFE; bedbound, inability to take food & drink, unable to take oral medication, drowsy, semi conscious/unconscious, peripherally cyanosed, mottled skin, needing full assistance with all care, profound weakness, reduced cognition, difficulty swallowing, changes to breathing patterns, irregular pulse, hallucinations, disorientated to time and place.

6. Recognising changes • Signs & symptoms • Information gathering • Being a detective!

7. Three triggers for Supportive/ Palliative Care to identify these patients we can use any combination of the following methods: • 1. The surprise question • 2. Choice/ Need - The patient with advanced disease makes a choice for comfort care only, not ‘curative’ treatment • 3. Clinical indicators - Specific indicators of advanced disease for each

8. The Surprise Question • ‘Would you be surprised if this patient were to die in the next 6-12months’ - • an intuitive question looking at co-morbidity, social and other factors. • If you would not be surprised, then what measures might be taken to improve their quality of life now and in preparation for the dying stage. The surprise question can be applied to • years/months/weeks/days and trigger the appropriate actions enabling the right thing to happen at the right time eg if days, then • begin a Care Pathway for the Dying.

9. PROGNOSTIC INDICATOR GUIDANCE (PIG) • Cancers • Organ failures- heart failure, COPD, emphysema, kidney failure, liver failure etc • Neurological conditions – stroke, dementia, Parkinsons disease, frail elderly

10. Cancers Cancer trajectory

11. Cancers- the clues • No further treatment options- information from hospital or GP OBSERVE FOR; • Needing more help from you to perform daily tasks- i.e. personal hygiene • Loss of appetite- taste changes, weight loss, feeling and/or being sick, muscle wasting, (supplements etc do not reverse the weight loss) • Increased resting metabolic rate; bodily functions speeding up- breathing & pulse-shortness of breath • Less able to manage things needing concentration or effort i.e. fastening buttons, writing or reading. • Withdrawing from the world

12. And…… • Much more tired; • How long are they spending each day in bed/lying down? • Spending more than 50% of their time in bed, prognosis estimated to be less than 3 months.

13. Organ failures HEART & OTHER ORGAN FAILURES

14. Heart failure • May be called heart failure or congestive cardiac failure (HF,CCF) • Many hospital admissions for symptoms, getting more frequent & closer together • No obvious reversible cause- i.e treatable chest infection • On maximum drugs • Swollen ankles and swelling may spread- stays dimpled if gently pressed (pitting) • Deteriorating kidney function • Shortness of breath at rest or on the slightest movement. • Blue, mottled, cold hands & feet, blue lips (cyanosis)

15. Lung conditions • changes in lungs lead to difficulty breathing out • poor oxygen supply from the lungs to the heart- may have same symptoms as heart failure • many hospital admissions for symptoms, getting more frequent & closer together • increasing difficulty breathing even with help • trend of activity • increased confusion

16. Kidneys- renal failure become damaged by; • age • infection • other organ failures; • high blood pressure • low blood pressure • Damage can be clearly seen in blood tests; -results?

17. And….. • not passing urine or passing small amounts that are dark or sludgy • generally feeling ill & tired • feeling and/or being sick • loss of appetite & weight loss • abdominal pain • confusion & agitation • changes in skin & nails & bleeding • bone pain & restless legs etc

18. Liver failure The job of the liver; Help with blood clotting Help with infections Breaks down & gets rid of old red blood cells Breaks down drugs Helps the digestive system get rid of fats

19. And… • You may see; • Increased bruising • Increased infections • Jaundice often starting with whites of eyes • Different response to drugs- more side effects, more easily overdosed, less effective pain relief • Pale, fatty stools • Itching

20. Neurological conditions Dementia

21. What does advancing dementia look like? • 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

22. And at least 1 of these….. • 10% weight loss in previous 6 months without other cause • recurrent infections • severe pressure ulcers • reducing oral intake- both food & fluids, • aspiration pneumonia

23. Barthel Score • UK version has a maximum score of 20 • Measures ability in activities of daily living • Low Barthel score = advanced dementia • Barthel score of <3 = end stage dementia • i.e. Barthel score of less than 3 = prognosis of less than 6 months

24. Communication &Coordination • Discussions & sharing of information with resident, staff, family and other health professionals involved-GP, SPA, specialist nurses

26. CASE STUDY 1- CANCER Derek is 62 and has been in your care home for 3 months now. He was admitted following a diagnosis of malignant brain tumour; he has previously had surgery and radiotherapy, chemotherapy was offered but Derek declined. Derek appears to be deteriorating he is occasionally confused and suffering with frequent headaches. His wife Betty has visited every day but has looked increasingly tired recently. Derek and Betty have two sons. Derek had his own business but this has been taken over by his sons since Derek was diagnosed. Both sons run the business which is situated many miles from the care home preventing them from visiting. One day whilst you are attending to Derek Betty starts to cry, she begins to tell you about her concerns. She asks that should Derek become poorly he stays with you and doesn’t go to hospital. Betty says she feels that after being married to Derek for so long she knows him best and that previously when in good health he had talked of not wanting to end his days like his father had in hospital. She adds that he would hate for his sons to witness his demise.

27. CASE STUDY 2 -DEMENTIA Doris is a 78 year old lady who has lived in your care home for 9 years. Doris has severe dementia and relies on care staff for all aspects of her care. The only person to visit Doris is the local Parish Priest who gives Doris a blessing each week as she is no longer able to take communion due to swallowing difficulties. There is no next of kin, family or friends recorded for Doris. Your staff have become close to Doris over the years and have seen the deterioration from mild to advanced dementia. Doris is nursed in bed and no longer able to verbally communicate with staff however your care staff have developed ways of communicating using their knowledge of Doris and reading her non verbal communication. A number of your care staff have reported a change in Doris’s condition stating she appears weaker and is sleeping for longer periods however they are unable to be more specific. You have requested a GP visit, although Doris’s regular GP is currently on sick leave. You and your staff have strong views that Doris should be cared for in your home and not admitted to hospital

28. CASE STUDY 3 – ORGAN FAILURES Joan is a 71 year old lady who has lived in your care home for 10 months. Joan has a diagnosis of COPD and has found it increasingly difficult to maintain her activities of daily living. Joan uses a wheelchair to aid mobility and relies on the nursing staff for assistance with her daily needs. Joan’s current physical condition has been deteriorating; Joan has recently had a hospital admission for exacerbation of her condition which was treated successfully however on return to your home Joan appears more dependant and low in mood. On attending to Joan one morning she comments to you she “feels tired with her existence” and never wished to live in this way. Joan has a large family 3 daughters Barbara, Edith and Rita and 2 sons Frank and James. Joan’s daughters visit on regular basis and are quite involved in directing the care Joan receives. It has taken some months for Joan’s daughters to gain trust in the care staff within your home as they have found handing the care of their mother to you difficult. Joan’s sons are less involved with her care although they visit on a regular basis. Following the recent hospital admission Barbara has expressed to you she feels her mum “can’t take any more” Edith and Rita however were extremely impressed in the outcome of the Joan’s treatment and commented how well she always appears whilst in the hospital.

29. Traffic Light Alert form End of life care Register Change of Colour Alert Form Name of Resident………………………………….Date………………… Details of Change of Condition e.g. Pain, Mobility, Continence, breathing, skin condition/deterioration, breathing. ……………………………………………………………………………………………………………………………………………………………………………………………………………………………………… • Have the following measures been put in place? • Aircell mattress…………………………. • Dietician/S.A.L.T informed………………….. • Macmillan nurse informed…………………… • G.P. informed………………………………… • Family informed……………………………… • Care plans amended………………………….. • Funding team informed………………………. • General Manager informed…………………... • Kitchen staff informed……………………….. • L.C.P. if relevant…………………………………… • District nurses informed……………………… • All staff informed………………………………….. • OOH staff informed……………………………….. • Oral care products prescribed……………………… • If any other problems identified enter here……………………………………………………………………….………………………………………………………………………………………………………………………………………………………… • Signature of person completing form …………………………………

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

31. Plan of action • How will you implement the register? • Who will do it? • How will the outcomes be shared? • Who will be responsible for the actions? • How will it be reviewed?

32. OPENING END OF LIFE CONVERSATIONS

33. Barriers to end of life conversations Capacity Upsetting- unleashing strong emotions Lack of knowledge Difficult questions Invading privacy Causing arguments Professionalism? Breaking bad news

34. Mental Capacity Act 2005 Choice and decision- making by, and on behalf of, people with impaired mental capacity

35. 5 Principles • Presumption of capacity • Individuals should be supported where possible so they can make their own decisions • People have the right to make decisions that may seem unwise • Decisions should be in a persons best interest • Decisions should be as unrestrictive as possible

36. Other barriers…. • Timing • Privacy • Opening the conversation • Information gathering • Involving other health professionals • Communication skills- allowing silence, listening, identifying cues, difficult questions, collusion. • Am I the right person to have this conversation • Learning from experience

37. Timing • Use cues from resident and/or family • Triggers from residents condition; • Deterioration • Information from hospital etc • Where and when?

38. Communicating effectively • Jargon and medical terminology- I’m so glad I’ve only got a tumour- I thought it was cancer! • Don’t tell him nurse! • Offering false hope or unrealistic options

39. Breaking bad news • Warning shot • chunk & check

40. Reflection • How did that go? • Did I meet the residents/ families agenda or my own? • Would I do things differently next time? • Make your own notes

41. STEP 1 Policy • Identify residents in the last year of life • Implement an end of life care register in the home • Identify the appropriate time to undertake end of life care discussions • Involve staff and other health professionals in this process

42. Have we achieved today’s objectives? • Identify how the NW End of Life Care model & tool supports an End of Life Register • Identify when is the correct time to undertake end of life discussions, considering communication and capacity barriers • Link to the end of life care policy for residential homes in Warrington

43. Homework • Feedback to all staff contents of Step 1 workshop • As a team identify residents who may be in the last year of life using the Prognostic Indicator Guidance, North West Model and North West Tool • Commence the North West End of Life Care Register • Bring any assessment tools used within the home to Step 2 workshop • Continue to complete Post Death Information Audit Form

44. Any questions? Look forward to seeing you on 5th October at 10am Pam Williams Pamela.williams@warrington-pct.nhs.uk Tel; 01925 579201 Fax; 01925 579202