Dr. A. Kerigan BREATHLESSNESS AT THE END OF LIFE

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1 Dr. A. Kerigan BREATHLESSNESS AT THE END OF LIFE

2 Faculty/Presenter Disclosure Faculty: Dr. A. Kerigan Relationships with commercial interests:* - Grants/Research Support: None - Speakers Bureau/Honoraria: None - Consulting Fees: None - Other: None

3 OBJECTIVES 1. Origin of breathlessness 2. Reviewing the multiple cause and dimensions of breathlessness 3. Understanding the place of opioids in management 4. Anticipating and treating dyspnea crises

4 WHY DO WE GET BREATHLESS? IN A NORMAL BREATH The requested action, i.e. the depth of breathing, is checked against what the respiratory center expects in terms of volume and the effort required If it matches, then sensation of breathing does not rise to the conscious level If there is a mismatch, then sensation of breathlessness occurs

5 WHY DO WE GET BREATHLESS? BREATHLESSNESS OCCURS WHEN Increase in impedance requires more work for a given breath Increase in resistance (asthma, COPD) Increase in stiffness (heart failure, pulmonary fibrosis) Weakness in respiratory muscles leads to a reduced volume for a given breath (Motor neurone disease) Increase in demand (exercise, hypoxia) Increased central perception leads to increased awareness of the need to breathe (anxiety)

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7 61 year old gentleman Nov Presented with shortness of breath and a right lung mass on CXR Originally from Portugal Separated from wife, living by himself with 2 sons locally Lived on upper floor with 28 steps to negotiate Unemployed for 2 years Background of heavy smoking with breathlessness on modest exertion

8 61 year old gentleman CT scan/bronchoscopy showed a large tumor obstructing RUL/RML bronchi Underwent endobronchial tumor removal followed by brachytherapy and external radiation Noticed improvement in breathing following this but still had significant breathlessness (7/10 on ESAS)-referred to Dyspnea Clinic Indicated that at worst breathing was 9/10 with distress also rated 9/10 (usually after climbing stairs) but could be as good as 4/10.

9 61 year old gentleman Had been started on Opioids for pain unclear whether they helped breathing, although noted benefit if woken at night Also begun on diuretics for leg edema, although no clear evidence of heart failure Oxygen therapy commenced which was of benefit on exertion (6MWT 190m with mild desat on RA) Using Ventolin on as required basis (had been on Dexamethasone but tapered off due to edema)

10 61 year old gentleman Begun on Spiriva based on reversibility of PFT On follow-up, indicated some improvement in breathlessness although other supportive measures to improve function also started.

11 61 year old gentleman Factors potentially contributing to this man s breathlessness; Airflow obstruction Loss of lung volume (bronchial obstruction/radiation fibrosis) Possible heart failure Deconditioning Respiratory muscle weakness Lack of social supports Undesirable accommodation

12 Breathlessness has Multiple Causes Dyspnea in the Advanced Cancer Patient (Dudgeon : JPSM 1998; 16: 212) 100 consecutive patients with advanced cancer identified with breathlessness Median VAS (100 mm scale) SOB 49mm Anxiety 29mm

13 Breathlessness has Multiple Causes Features associated with breathlessness Spirometric abnormalities (5% obstructive, 41% restrictive, 47% mixed) Maximum inspiratory pressure 16 cm H20 (median) Parenchymal and/or pleural abnormality (65%) Cardiac ischemia/heart failure/atrial fib (29%) Hypoxia (40%) Resectional surgery (12%) Anemia (20%) Median number of factors potentially contributing to breathlessness = 5

14 Dyspnea check list for potentially contributing factors - pulmonary COPD Restrictive lung disease/radiation fibrosis Tumour involvement of lung Pleural based disease/effusion Lung resection Chest wall deformity Respiratory muscle weakness Pulmonary embolism

15 Dyspnea Clinic check list - non-pulmonary Heart failure Anemia Ascites Pain Obesity Deconditioning Fatigue Difficulty with pacing activities Anxiety Unsuitable environment

16 Breathlessness has Multiple Dimensions Understanding the unique impact of the symptom and the resultant suffering embraces all dimensions Concept of Total Pain first developed by Cicely Saunders Total Dyspnea is the corresponding understanding of breathlessness (Curr Opin Support Pall Care 2008, 2: )

17 Breathlessness has Multiple Dimensions More than physical Importance of; Emotional/psychological Spiritual/existential Social/interpersonal Dimensions do not stand alone but are closely interrelated

18 Breathlessness has Multiple Dimensions Emotional/psychological dimension Anxiety will my inhaler work Fear of unpredictability not knowing when the next attack will occur Memory of past experiences Depression Ability to cope with attacks Fear of suffocation Anxiety over family and the future

19 Breathlessness has Multiple Dimensions Spiritual/existential dimension Loss of status and dignity Anger Failure to find meaning Fear of unknown/dying Guilt ( am I responsible for this )

20 Breathlessness has Multiple Dimensions Social/interpersonal dimension Increasing dependency for everyday activities Resulting stress on informal caregivers Isolation and loss of supportive relationships Family dynamics/tension Financial impact of illness (loss of income/cost of care

21 MANAGEMENT OF BREATHLESSNESS Focus Intervention 1. Decreasing resistance Bronchodilators 2. Decreasing stiffness Diuretics for heart failure Aspiration of pleural effusion 3. Decreasing demand Pacing/breathing exercises Oxygen for hypoxia 4. Compensate for resp. Non-invasive ventilation (BiPAP) muscle weakness 5. Reduce central perception Opioids Fan across Face

22 Do Opioids Relieve Breathlessness? Systematic review of placebo controlled short term studies (Thorax 2009, 939) Net benefit on breathlessness of 7mm on 100mm analogue scale However only answered question of efficacy short-term benefit in controlled conditions. What about effectiveness? Is the benefit sustained over the long-term in the real world?

23 Do Opioids Relieve Breathlessness? Pharmacovigilance Study of Once-Daily Opioids for Chronic Dyspnea (JPSM 2011, 388) Not placebo controlled Dose finding in 10mg increments of morphine to achieve 10% improvement in dyspnea over baseline 63% responded (51% had 15% improvement, 41% had 20%) 90% required 20mg of morphine or less 35% withdrawal for lack of benefit or side effects Of original responders, only 50% remained on morphine at 3 months.

24 Can We Predict Which Patients will Respond to Opioids? The Dyspnea Target incorporates several factors that might explain differences in responsiveness. Hypothesized that key determinates of opioid responsiveness are related less to intensity and more to distress of dyspnea and its anxiety and fear with the associated limbic responses. Each of these factors relate to the Total Dyspnea experience by the patient.

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26 Prevalence of Fear and Anxiety Fear and distress over the impact of health (Value Health 2009, 1018) Fear of dying and suffocation (chest 2006, 1333) Living in fear of next exacerbation (Resp Med 2001, 196) Time course of overall worsening of Dyspnea Gradual worsening of dyspnea experienced in an exacerbation or in response to a stress (walking, stair climbing) (Qual Health Res 2004, 760)

27 Perception of control/mastery Is the patient able to reduce distress by pacing, resting, breathing techniques etc.? (Ann Int Med 1995, 823) If not, would opioids be able to relieve their distress? Predictability of onset Unpredictable worsening of dyspnea leading to anxiety and panic

28 51 year old lady 2013 : first diagnosed with motor neurone disease Initial presentation with leg weakness earlier in year Wheelchair bound at time of diagnosis Family history (father, sister) of MND

29 51 year old lady Difficult winter and spring with increasing breathlessness Benefit from starting of BiPAP and initiation of opioids (slow release hydromorphone) Some difficulty with swallowing but refused PEG Admitted in June with acute respiratory distress following aspiration

30 Seen at home in August 51 year old lady Had not been tolerating BiPAP at night Ineffective cough with no evidence of diaphragm function on exam Challenge was how to support caregiver in handling worsening function and acute episodes Restarted BiPAP at night Defined action plan (sl Ativan; sc Morphine) for acute episodes/panic to avoid hospital re-admission

31 51 year old lady Major problems with coughing helped with breath stacking/abdom thrusts Panic response to inability to clear mucus helped with starting of Clonazepam (this was precipitant of hospital admission)

32 51 year old lady Further respiratory difficulties led to switching opioids to continuous sc infusion by pump Reported improvement in breathing at next visit with BiPAP now tolerated and beneficial No requirement for action plan but using Ativan for anxiety However over next week, episodes of breathlessness distress not responding fully to bolus morphine, required starting of prn Midazolam

33 Last few days before death spent at home with family Full-time nurse present 51 year old lady Required Midazolam up to every 2 hours to relieve distress in addition to continuous Morphine

34 Anticipating and Managing Dyspnea Crises Three interactive components leading to crises (Annals ATS 2013, S98) Acute worsening of dyspnea experience (a target for opioids?) Heightened anxiety/coping dysfunction ( total dyspnea ) Overwhelmed caregiver Overall goal of avoiding ER visits

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36 Anticipating and Managing Dyspnea Crises Assisting the caregiver and patient to cope with dyspnea crisis Action plan needs to allow for appropriate use (and if necessary) escalation of opioids and anxiolytics Education needs to include recognition of early onset of crisis Role of early involvement of palliative care in formulating goals of care, co-ordination of services and development of action plan

37 Anticipating and Managing Dyspnea Crises Can we empower caregivers to plan better for a dyspnea crisis? What are some of the threats to caring? (Pall Supp Care 2009, 153) Unable to relieve symptoms ( helplessness ) Previous bad experience Progression of symptoms and the accompanying uncertainty Anxiety over the next attack ( it could be the last ) Lack of support

38 Anticipating and Managing Dyspnea Crises What are some of the potential strengths for caregivers? Support from team Access to resources Empowered by knowledge (action plan) Confidence in abilities derived from experience in previous crises

39 Anticipating and Managing Dyspnea Crises Assisting the caregiver and patient to cope with dyspnea crisis Planning needs to be part of overall dyspnea education and management Key objective is reduction of anxiety of both patient and caregiver Both non-pharmacologic and pharmacologic responses have to be developed

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