Palliative Care and ILD

Transcription

1 Palliative Care and ILD Dr Sabrina Bajwah Consultant Palliative Care & Honorary Senior Lecturer King s College NHS Foundation Trust & Cicely Saunders Institute, King s College London Aims Background Prognosis Pathophysiology and management of symptoms Models of palliative care in ILD The future of ILD palliative care Background Idiopathic pulmonary fibrosis White, male, 50-60y 5000 patients a year die from ILD Incidence is rising High financial burden Poor treatment options 1

2 Bad prognostic indicators Age Male Lower BMI Radiological extent of disease Medical Research Council Grade 5 Complications/co-morbiditiespulmonary hypertension, emphysema, and bronchogenic cancer >10% change in FVC or TLCO in 6 months *** TLCO <20% *** PALLIATIVE CARE NEEDS OF THOSE LIVING WITH ILD 2

3 Bajwah et al

4 Symptoms and associated distress Impact of disease on both patients and carers Breathlessness I was gardening after 36 years of er er of working in management, and then starting to chop down trees and digging um holes in the ground in the open country side, the sun beating down and all the plants, and everything, I was loving every moment of it and now I can hardly get into my own garden, I bend down to do pull a weed out, I have to take 10 minutes to get up off my knees again., Peter, in his 60s with IPF Cough when it's really really bad, I'd make a trade with the devil (..) because I'm so (..) flat and exhausted and [I} think well I'd rather not go on. Peter, in his 60s with advanced IPF 4

5 Psychosocial he gets um I told you, very touchy, very (..) angry and obviously I'm the only one around, um so from that point of view we do argue more um, (3) so I suppose yes it did, it's made it very difficult from the point of view of that, um where he um (..) he can't cope with it, and I'm there, so he'll tend to vent whatever he's feeling at me, um verbally or (..) you know (..) I just won't talk um so it is a strain, it it puts a strain on the whole relationship really (SIGH). sometimes he gets quite emotional about it all, and other times he gets quite nasty. Joan, wife of Paul Poor understanding of disease and the future Health professionals lack knowledge and confidence Poor communication and co-ordination of care at the end of life 5

6 MANAGING THE SYMPTOMS OF ILD Breathlessness Disease related-lung function TLCO <40% Indirect-pulmonary hypertension Acute-infection Psychological-anxiety 6

7 Management of breathlessness Multifactorial- detailed history taking 1) Treating reversible causes.. Pulmonary hypertension Check whether your patient has pulmonary hypertension Consider referral to a pulmonary hypertension specialist Treatment with sildenafil may improve functional ability and quality of life 2) Non-pharmacological measures Forest plot showing comparison of effect of pulmonary rehabilitation versus control on change in 6-minute walking distance (6MWD): effect size 27.4 (95% CI 4.1 to 50.7), p= Bajwah S et al. Thorax 2013;68: Copyright BMJ Publishing Group Ltd & British Thoracic Society. All rights reserved. 7

8 Management of breathlessness Multifactorial- detailed history taking 1) Treating reversible causes.. Infection, pulmonary hypertension 2) Non-pharmacological measures 3) Pharmacological interventions 1) Opioids Pharmacological 2) Benzodiazepines 3) Oxygen 4) Antidepressants 8

9 Opioids Dosing and dose titration Marked improvement in 24hrs but benefit continued to increase over 6 days. Max 30mg/24hr Switch to sustained release ASAP. Currow DC et al. Once-daily opioids for chronic dyspnoea: a dose increment and pharmacovigilance study J Pain Symptom Management 2011; 42: Benzodiazepines 9

10 Oxygen guidance Antidepressants Serotonin affects the modulation of central respiratory control and sensitivity to carbon dioxide Reduction in breathlessness in healthy volunteers using SSRIs Mirtazepine BETTER-B Feasibility double blind multi-site RCT Higginson et al 10

11 Summary of management of dyspnoea Take detailed history including physical, social, psychological and social impact of breathlessness Treat any treatable/reversible causes of breathlessness (eg pulmonary hypertension/infection) Consider non-pharmacological interventions including pulmonary rehabilitation if appropriate. Early use of low dose sustained release opioids may be appropriate Only consider benzodiazepines if other psychological interventions have been ineffective/disease is end stage Benzodiazepines may be appropriate in the short term as long term anxiolytics are commenced Oxygen should be used only after a formal trial of its effectiveness. Short burst oxygen should be offered if adequate relief is not obtained by using the fan in combination with other pharmacological and nonpharmacological treatments No restriction on flow rate if ILD alone Cough-pathophysiology Medication-ACE inhibitors Acid reflux SOB, chest pain, cough Lifestylechanges High doses of PPI and H2 antagonists needed Functional up regulation of sensory fibers within the respiratory tract due to induction of nerve growth factors Dysregulation of the immune system Anti-tussives No evidence for simple linctus, codeine or oramorph in ILD Thalidomide Horton MR, Santopietro V, Mathew L, Horton KM, Polito AJ, Liu MC, et al. Thalidomide for the treatment of cough in idiopathic pulmonary fibrosis: a randomized trial. Ann Intern Med. 2012;157(6): Gabapentin Ryan NM, Birring SS, Gibson PG. Gabapentin for refractory chronic cough: a randomised, double-blind, placebo-controlled trial. Lancet. 2012;380(9853):

12 Summary of management of cough Stop medication which may be aggravating cough/worsen reflux Proton pump inhibitors (PPIs) such as omeprazole mg twice daily or equivalent taken before meals for at least 8 weeks even if the patient does not have reflux symptoms. Low tolerance for use of H2 antagonist alongside PPI Prokinetic agents such as metoclopramide 10 mg three times daily may be required in a proportion of patients It is reasonable to trial routine anti-tussives such as codeine linctus and oramorph in ILD If these are ineffective consider specific neuromodulating agents such as thalidomide or gabapentin Models of ILD palliative care 12

13 BACKGROUND Case conferencing at the interface between primary and specialist care may deliver individualised holistic care while addressing important unmet palliative care concerns AIM To obtain preliminary information on how Hospital2Home influences the palliative care concerns of patients with advanced fibrotic interstitial lung disease (ILD) and their carers To evaluate the feasibility and acceptability of the intervention in this group. METHODS Fast-track randomised controlled trial Line diagram showing change in mean Palliative Care Outcome Scale (POS) with 95% CIs over time in the two groups. Sabrina Bajwah et al. Thorax doi: /thoraxjnl Copyright BMJ Publishing Group Ltd & British Thoracic Society. All rights reserved. Qualitative themes Support in the community Individualised care plan and practical problems addressed Co-ordination of care and efficiency Crisis management Palliative care and psychological support Symptom control Empowering community health professionals Advance care planning 13

14 Diagnosis Transplantation Antifibrotics End of Life The future of ILD palliative care 14

15 1) NICE guidance Palliative care highlighted as a quality standard All patients require palliative care assessment ILD health professionals- validated needs assessment tool Boland, J., Reigada, C., Yorke, J., Wells, A., Ross, J., Bajwah, S., Papadopoulos, A., Currow, D., Grande, G., Hart, S., Macleod, U., & Johnson, M. (2015). The adaptation, face and content validation of a Palliative Care Needs Assessment Tool for people with Interstitial Lung Diseases. Journal of Palliative Medicine February 2016 doi: /jpm ) ILD palliative care LRM consensus statement 3)Education ILD health professionals Palliative care health professionals Patients and carers Areas for Research 1) role of oxygen, opioids and neuromodulatory agents 2) Role of breathlessness intervention services and case conferencing 3) Models of palliative care in ILD Conclusion Deaths from ILD are increasing Patients and carers often suffer unmet physical and psychological needs Recent recommendations from NICE promote assessment of palliative care needs Education needed Further research into symptom management, complex interventions transitioning patients from the hospital to community settings and different models of ILD palliative care needed. 15

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