Palliative and Supportive Care in Cystic Fibrosis
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1 Palliative and Supportive Care in Cystic Fibrosis Dr William Flight Consultant in Respiratory Medicine Oxford Adult Cystic Fibrosis Centre 27 th January 2017
2 Overview 1. Cystic Fibrosis Clinical Aspects 2. Oxford Experience of CF End of Life Care 3. End of Life Care in CF Six Key Challenges 4. A Way Forward?
3
4 Woe to the child who tastes salty from a kiss on the brow, for he is cursed and soon must die Gabriel Metsu c.1660
5 Cystic Fibrosis of the Pancreas Andersen DH. Am J Dis Child 1938;56:344 Dorothy Andersen
6 The CF Gene: First Identified in 1989 CFTR
7 Cystic Fibrosis: A Truly Multi-System Disorder Sinusitis
8 Improving Survival in Cystic Fibrosis US CF Foundation Registry Report 2012
9 Improving Survival in Cystic Fibrosis US CF Foundation Registry Data
10 Survival in CF is Improving Even Among Patients with FEV 1 <30% Predicted George et al BMJ 2011
11 CF for the Geriatrician? Age-Related Macular Degeneration Hypertension Duodenal Ulcer Chronic Kidney Disease Cataracts Glaucoma ACE-I Related Angioedema Benign Prostatic Hypertrophy Hydrocele Colonic Polyps Ciprofloxacin- Related Achilles Tendonitis
12 CF Multi-Disciplinary Team Exercise Assistant Social Worker Administrator Doctors Specialist Nurses Dietitians Pharmacists Physiotherapists Clinical Psychologist
13 CF Drug Pipeline JS Elborn ERJ 2013
14 Cystic Fibrosis in 2017: Cause for Optimism?
15 Clinical Effect of Ivacaftor in Patients with CF and the G551D Mutation McKone et al. Lancet Resp Med 2014
16 CF: A Life Unlimited? Nathan Charles Western Force & Wallabies Hooker
17 CF: A Life Unlimited? Nick Talbot Mountaineer & CF Patient
18 CF: The Reality for Many Median age at death = 28 yrs Age at death UK CF Registry Report 2015
19 CF Lung Disease
20 CF Lung Disease
21 Slide courtesy of Prof AK Webb
22 Microbiology of CF Lung Disease Haemophilus influenzae Pseudomonas aeruginosa UK CF Registry Data 2013
23 CF Pulmonary Exacerbations Acute increase in respiratory symptoms: Cough Haemoptysis sputum Malaise Chest pain Fever Fatigue upper airway symptoms
24 CF Pulmonary Exacerbations & Mortality De Boer et al. Thorax 2011
25 Hydration Broad- Spectrum IV Antibiotics Broncho- dilators Chest Physio Pulmonary Exacerbation Management Controlled Oxygen Nutrition Glycaemic Control NIV
26 Intravenous Antibiotics for Pseudomonas aeruginosa in CF β-lactam + Ceftazidime 2-3g TDS Meropenem 2g TDS Tazocin 4.5g TDS/QDS Fosfomycin 4g QDS Aminoglycoside or Polymixin Tobramycin 7mg/kg OD Colistin 1-2 megaunits TDS
27 Oxford Experience: End of Life Care in CF
28 Oxford Experience deaths 3 post-lung transplant 1 death on Tx list Median age at death 30.5 yrs (range 21-73) 8/16 (50%) received specialist palliative care input Cause of Death
29 Oxford Experience deaths 3 post-lung transplant 1 death on Tx list Median age at death 30.5 yrs (range 21-73) 8/16 (50%) received specialist palliative care input Place of Death
30 Palliative Care in CF: Challenges & Opportunities
31 Severity Severity 1. Unpredictable Disease Progression When to discus End of Life & Tranplantation? Time Time
32 1. Unpredictable Disease Progression FVC FEV 1
33 2. Increasing Treatment Burden
34 2. Increasing Treatment Burden Daily Routine
35 2. Increasing Treatment Burden: Non-Invasive Ventilation Nocturnal NIV traditionally used as a bridge to lung transplantation May help stabilise disease progression Flight et al. JCF 2012
36 Pulmonary Exacerbations Acute Abdomen Respiratory Failure Acute Complications of CF Vascular Access Issues Massive Haemoptysis Pneumothorax Anaphylaxis
37 Pneumothorax in CF Lifetime incidence = 3.4% Risk factors 1 severe lung disease (FEV 1 <30%) increasing age chronic Pseudomonas aeruginosa infection Management chest drain 1: Flume et al. AJRCCM 2008
38 Massive Haemoptysis in CF Definition: >240ml blood in 24 hrs >100ml per 24 hrs for several days Lifetime incidence of 4.1% in CF 1 Risk factors: Increasing age Increasing severity of lung disease CF-related diabetes Staph. aureus in sputum 1: Flume et al. Chest 2005;128:729-38
39 Massive Haemoptysis in CF: Bronchial Artery Hypertrophy
40 3. Impact of Lung Transplantation
41 3. Impact of Lung Transplantation
42 3. Impact of Lung Transplantation
43 Extracorporeal Membrane Oxygenation (ECMO) Hayes et al JCF 2012
44 Hayes et al JCF 2012 Awake ECMO with Physical Rehabilitation
45 4. Geography
46 5. Infection Control & Isolation
47 6. Emotional Toll
48 6. Emotional Toll Source: CF Trust 2016
49 End of Life Care in CF: A Way Forward Training opportunities for CF MDT staff Transplant arena meetings Move towards integrated palliative care in CF symptom control alongside active therapy
50 End of Life Care in CF: A Way Forward Primary Care Transplant Centre Acute Hospital Palliative Care Adult CF Centre Community Palliative Care Hospice Paediatric CF Centre Paediatric CF Network Clinics
51 Summary Prognosis in CF continues to improve BUT Many people with CF still die as young adults Complexity of the disease and treatments is increasing We have real opportunities to develop excellent end-of-life care for all with CF
52 Dr William Flight Oxford Adult CF Centre Ward 5D, John Radcliffe Hospital Tel:
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