Palliative and End of Life Care in COPD Dr Barbara Barrie EOL Strategy Lead Berks West CCGs Thames Valley SCN EOL Lead

“Care of the dying is the litmus test of the NHS “ National Council for Palliative Care 2013 A good health system A responsible society

One Chance to Get it Right- 5 Priorities of Care When it is thought that a person may die within the next few days or hours… 1 This possibility is recognised and communicated clearly, decisions made and actions taken in accordance with the persons needs and wishes and these are regularly reviewed and decisions revised accordingly 2. Sensitive communication takes place between staff and the dying person, and those identified as important to them 3. the dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants

5 Priorities of Care cont. 4.The needs of families and others identified as important to the dying persons are actively explored, respected and met as far as possible 5.An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, co- ordinated and delivered with compassion. Care of the dying must be everyone’s business

What is different in COPD? Less likely to be in receipt of palliative care Fewer drugs prescribed for palliation Consult GP same number of times as someone dying with cancer diagnosis Many unmet needs with regard to palliation McKinley et al BJGP 2004

Global Burden of COPD Increasing in prevalence Significant impact on quality of life and functional capacity 10% prevalence in adults 4 th leading cause of death worldwide Only major disease in USA that has an increasing mortality Often linked with deprivation and poverty

When is a patient with COPD palliative? Surprise question? Avoid prognostic paralysis When to shift gear? Therapeutic goals of prolonging survival v palliative goals of relieving symptoms Choosing your language Treatment and care continue but the goals change “I wish” Statements

Typical Case History Mr B An 84 yr old man with end stage COPD and increasing breathlessness who finds activity increasing difficult. He has 2 recent crisis hospital admissions and is worried about further admissions and coping alone in future. Decreasing recovery and likely erratic decline

Three triggers that patients may be nearing end of life 1. The Surprise Question 2. General indicators of decline 3.Specific Clinical Indicators of Decline

Are there general indicators of decline and increasing needs? Decreasing activity –functional performance status declining –limited self care, in bed or chair 50% of the day and increasing dependence in most activities of daily living Co-morbidity –biggest predictive indicator of mortality and morbidity General physical decline and increasing need for support Advanced disease –unstable deteriorating complex symptom burden Decreasing response to treatments – decreasing reversibility Choice of no further active treatment Progressive weight loss(>10%) in past six months

General Indicators cont. Repeated unplanned /crisis admissions Sentinel events –falls/bereavement/transfer to nursing home Serum albumin < 25g/l Considered eligible for DS1500

Specific Clinical Indicators for COPD At least two of the indicators below : Disease assessed to be severe ( eg FEV1 < 30% of predicted) Recurrent hospital admissions (at least 3 in last 12 months) Fulfils LTOT criteria MRC Grade 4/5 –shortness of breath after 100metres or confined to the house Signs and symptoms of Right Heart Failure Combination of other factors – anorexia/ previous ITU /NIV /resistant organisms More than 6 weeks of systemic steroids in last 6 months

COPD Once established is progressive Risk of death from Respiratory Failure or complications of associated diseases ie CAD, CVD, CA lung These other diseases occur more often with COPD Multisystem nature of disease Only LTOT prolongs life –all other treatments are for symptom relief only

Barriers to ACP in COPD Physician centred Delayed diagnosis of COPD Unique disease trajectory with unclear transitions towards EOL Difficulties in prognosticating clinical course Co-morbidity Physician reluctance Capacity –time –fragmentation of care Limited episodic contact with patient and family that limits insight into their needs

Barriers cont. Acute hospital admission provide poor environment for ACP discussion Incorrect assumption that patients with advanced COPD would want treatment limitations Incorrect coupling of ACP with EOL and fear this causes distress /depression Assumption that ACP should begin at EOL

Barriers to ACP –Patient centered Patients may not tell doctors about initial exacerbations Assumption that doctor will start conversation when needed Avoidance of discussion out of fear/denial Poor understanding of their diagnosis /prognosis Misconceptions that ACP discussion are intended to deny necessary life-supportive treatment Depression,anxiety, social isolation, learned helplessness, cognitive impairment

High Symptom Burden in COPD Physical Psychological Social Functioning Spiritual distress Palliative care needs at all stages

Common Symptoms Breathlessness Cough Fever Haemoptysis Chest wall pain Fatigue Stridor

Breathlessness in COPD Most common symptom and very distressing Present in 56-98% COPD Multifactorial-emotion /anxiety /perception/ More severe than in Heart Failure/ lung cancer Patients limited activity –physical deconditioning Increased anxiety and depression Impaired QOL Loss of will to live near death Increased likelihood hospital admission

Non Drug interventions Pulmonary Rehab MDT Support Services NIV Positioning /fans /mobility aids

Drug interventions for refractory breathlessness Bronchodilators Inhaled steroids Theophylline Mucolytics LTOT Opioids –more benefit in young and those with severe breathlessness(more evidence for low dose sustained release preps)53% sustained benefit at 3 months Benzodiazepines(recent Cochrane meta analysis –no benefit /increased drowsiness) antidepressants, saline, furosemide

Symptoms Always remember prescribe for : Nausea/vomiting Anxiety Secretions Constipation Pain

In Conclusion “In Hippocrates day, the physician who could foretell the course of the illness was most highly esteemed even if he could not alter it. Nowadays we can cure some diseases and manage others effectively Where we cannot alter the course of events, we must at least (when the patient so wishes) predict sensitively and together plan care, for better or for worse.” Scott Murray BMJ 2005