1. Heart Failure Palliative Care/Heart Failure Audit

2. Group 1 Group 2 Group 3 Optimised Asymptomatic Symptomatic during optimisation Symptom Palliation Optimised Progressively Symptomatic Discharged Asymptomatic Impeccable Assessment End Stage HF

3. AIM Identify number of patients being actively managed in the service with advanced HF Identify common features in this group Identify the training and educational needs of heart failure professionals

4. Advanced Heart Failure Is a state in which patients have significant cardiac dysfunction with marked symptoms of dyspnoea, fatigue, or symptoms relating to hypo perfusion at rest or with minimal exertion despite optimal tolerated evidence based medical therapy. These patients have refractory symptoms that require specialised interventions in order to stabilise and prolong life.

5. Criteria Maximum tolerated evidence based therapy NYHA class III/IV Combined diuretic therapy Multiple contacts including hospital admission/home visit/clinic and telephone contacts Renal Impairment Opiate prescription Patients had to meet with 3 or more of the above inclusion Criteria.

6. Data Collection Using the Athena data base information was collected from the 5 acute sites in Glasgow Glasgow Royal Infirmary Western Infirmary Stobhill Victoria Southern General Review period was from 1 st February to 31 st July 2006 inclusively.

7. Findings 73 patients identified (51 male and 22 female) from a total case load of 766 patients Age range 42-92years mean age 73years Deprivation: 48% high deprivation 30% medium 22% low Social Aspects: 34% live alone with 47% dependant on carers for support with daily activities

8. Characteristics All 73 patients were on maximum tolerated therapy NYHA class: 71% NYHA III 26% NYHA IV 3% NYHA II 66% were on or had been prescribed combined diuretic therapy during the review period 99% required increased monitoring from HFLNS (1 patient was receiving 24hr care in nursing home) All 73 patients were experiencing progressive symptoms 22% were prescribed morphine based medication

9. Renal Function/Hb/BP/HR Sodium range: 123-145 (137) Potassium: 2.6-5.8 (4.1) Urea: 1.8-36.1 Creatinine: 56-429 (148) Haemoglobin: 8.1-15.5 (11.3) Systolic Range: 80-165 (106) Diastolic Range: 40-75 Heart Rate Range: 50-100 (68)

10. Oedema 40% had persistent oedema during 6 month period 53% had oedema intermittently over 6 month period 7% had no oedema evident over the 6 months Sites Ankle/calf and thigh main areas affected Less common was sacral/scrotal/facial Ascites affected 15% of patients

11. Pain/Sleep/Fatigue 30% had cardiac pain 47% had other type pain mainly gout/arthritis/heavy legs 21% reported pruritis 11% weeping legs 23% dry flaky skin 85% poor quality sleep 74% with worsening symptom of fatigue

12. Contacts 73 patients generated a total of 482 home visits Home visit ranged from 1-18 (av. 6.6 per patient) 54 patients (74%) generated a total of 86 separate admissions (av. 1.59 per patient) Admission range 1-6 28 patients (38%) had 70 clinic contacts (av.2.5per patient) Clinic range 1-8 5 patients also had other contacts (day hospital/GP visit) 61 patients (84%) generated 244 telephone calls (av. 4 per patient) Telephone range 1-11 A total of 887 contacts were made during the 6 month review period (av. 12 per patient )

13. Survival High mortality, 25 patients (34%) died during 6 month review 48%,12 patients died in hospital 40%,10 patients died at home, 5 of which died suddenly 12%, 3 patients died, 2 in a hospice and 1 a nursing home The 25 patients who died were in the service for a total of 13,500 days Median days was 410 Range was 16 -1,806 days

14. Significant Conversation Prognosis documented in 10 patients Resuscitation status documented in 3 patients Preferred place of care documented in 3 patients

15. How Do We Know This Is The Beginning of the End? For many heart failure patients the day that they die they will probably appear no more ill than any other day during their illness. This is in sharp contrast to patients who die from cancer as they are most likely to be the most ill they have ever been on the day of death (Connolly, M 2000)

16. What Have We Learned From The Audit? Patients have common features Prognosis is poor Poor symptom control/sleep pattern leading to increased hospital admission (74%) despite review from heart failure nurses Anaemia predictor of mortality mean Hb 10.7 in group of deceased patients compared to mean of 11.7 in those patients still alive (p=0.017) 72% has Hb less than 12.5 and the mean Hb decreases with NYHA class Many aspects not documented for example prognosis/preferred place of care and other symptoms not specific to heart failure but relevant to the patient and overall symptom control for example nausea 23 patients asked about this and 52% reported it was a problem. Likewise 27 patients asked about pruritis 56% reported that it was a problem symptom.

17. Education and Training Needs Impeccable assessment – recognising the dying patient Professional Collaboration- can anything else be done? Symptom Control- managing unpleasant symptoms without resulting in hospital admission Effective communication-truth telling collaborative practice Accessing services,,knowing what, how and when to access services appropriately Pro-active management instead of re-active

18. Vision Register of Identified Patients Documented Management Plans Symptom Management Guidelines Fast Track Patients by-passing A&E Dedicated heart failure beds/recliner chairs (IV diuretics etc) Hospice dedicated to Heart Failure/Non- malignant disease Education/Training packages for professionals Support networks for carers

19. “ One must die proudly when it is no longer possible to live proudly” Friedrich Nietzsche Heart Failure

20. THANKYOU