Palliative Care In Respirology: Who s job is it, anyway?! Everyones!

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Palliative Care In Respirology: Who s job is it, anyway?! Everyones! Dr. Shalini Nayar MD Respiratory Medicine Palliative Medicine Clinical Assistant Professor, Dept of Medicine, UBC

Canadian Cancer Society

Unpredictable disease trajectory EARLY! Slow decline Dramatic exacerbations (recovery OR unexpected death) Prognostication is uncertain only dementia is more uncertain Death can often be unexpected communication challenge

Bowtie Model

Mr. F 65 y.o. male CC: Pain L chest wall, severe dyspnea, decreased fxn over 2 months (now in wheelchair) PmHx: COPD FEV1 1.23 L (36%) Recurrent hospitalizations, pseudomonas colonization L pneumonectomy for NSCLC Remote PE/DVT L CAD CABG x 3 2002, STEMI 2009 HTN/Dyslipidemia Duodenal ulcer

Mr. F Medications: Azithromycin 250 mg daily (COPD) Prednisone 50 mg (on taper) Theophylline 600 mg daily Advair 250 mcg 2 inh BID Tiotropium inh daily Bisoprolol 2.5 mg Simvastatin 40 mg Ramipril 2.5 mg Nortriptyline 50 mg qhs Clopidogrel 75 mg Vit D/CaCO3 Pantoprazole 40 mg Gabapentin 900 mg tid Oxycontin 80 mg tid, 20-30 mg PRN Lasix 40 mg daily Social: Lives with wife, no other supports, ongoing smoking, pays for O2 privately, difficult finances

Mr. F History: Dyspnea - Limiting factor MRC Dyspnea scale 5 No IADLs Worse in early am and exertion Insidiously progressive No infectious/sputum/cough Pain - Old pain from chemotherapy peripheral neuropathy Worsening chest wall pain OPQRST, not acute F/U BCCA in 3 mos re: RLL abnormality on CT

Mr. F No change to CXR since hospitalization Bloodwork in normal range CT done in-hospital 2 wks prior: no PE F/U BCCA scan in a week At baseline FEV1 Qualifies for home O2 Overall: Insidious, no obvious acute pathology Call a palliative care MD? Extra interventions?

Mr. F Using oxyneo 80 mg po tid Uses 4-6 BTD per day of 30 mg for pain Increased dose to 100 mg po tid. BTD 30 mg po q1h PRN Instructed to use BTD for incident dyspnea Early am, shower, dressing Remarkable QOL improvement Pulmonary rehab CHN, home OT, smoking cessation, social work, education for wife re: acute episodes, community DNR, close follow up

Challenges to addressing palliative care From the patient s point of view: Patients are generally aware and state their preference to forgo life support if Prognosis and QOL is poor Patients are willing to discuss end of life issues but they are often waiting for staff to begin discussions Patients look to us for guidance Caregivers are often inaccurate about patient s QOL

Example: COPD.. A palliative disease? Studies looking at HR-QOL suggest patients with advanced COPD suffer with multiple symptoms Reduced QOL overall Dyspnea Pain Depression/Anxiety In one study, QOL was lower than in patients with NSCLC COPD is common it is the 4 th leading cause of death in Canada and responsible for amongst the highest hospital admissions

COPD Physical Psychosocial Dyspnea - universal Pain 30% - 70%! Physical frailty and homebound Anxiety 30% Depression up to 70% Caregiver burnout Social isolation ACP and advanced symptom management

What the Literature tells us At least 8 major studies done looking at patient reported symptom burden and palliative care needs: Despite heterogeneity in outcomes/population there is a consistently LOW QOL in these patients Low level of social functioning Intense dyspnea in the last year of life Inadequate supports in advanced disease

Challenges In COPD Increasing symptom burden at home D/C home without longerterm care addressed NO CONVERSATION Unable to see MD for nonemergent assessment AECOPD with admission MD reluctance?...

Reliable Criteria? The National Hospice and Palliative Care organization states that end-stage COPD is suspected in: Disabling dyspnea at rest (In US: corresponding FEV1<30%) Poor/no response to bronchodilators Bed-to-chair existence Repeat hospitalizations (NOT quantified) Hypoxemia at rest Hypercapnea (PCO2>50) RHF from pulmonary cause Unintentional, progressive wt loss (>10% over 6 months) Resting tachycardia (>100 bpm)

Case 1 56 y.o. man with ALS for 3 years. Lives at home with his wife. Scenario 1: on nocturnal BiPAP alone Scenario 2: on volume-cycled ventilation This man requests palliative care consultation. What are the major issues to discuss?

Case 1 What will likely end his life (naturally) What is the life expectancy? what does is it depend on? What type of lung mechanical issues are there in ALS? What documentation should you include regarding ventilation? What are some of the greatest fears regarding death that ALS patients are concerned about? What are some interventions we can do to decrease morbidity while living with ALS? How would you discontinue his volume-cycled ventilation (and where!)?

Case 2 25 y.o. woman with Cystic Fibrosis, acutely short of breath. Scenario 1: on the lung transplant list Scenario 2: Does not want lung transplant

Case 2 What acute interventions can be done to help with her SOB? What are the most likely causes of SOB in this patient? What is the role of a palliative care consultant in these scenarios? What are the various forms of bronchiectasis? What interventions in bronchiectasis (including CF) would you continue or discontinue as trajectory changes? CF-specific: what other organ systems do we need to worry about?

Key Points Palliative care affirms life and seeks to minimize total suffering Palliative care is available early in disease trajectory There is evidence to involve us early but not enough Non-malignant diseases are not referred commonly, but early interventions can be done at multiple points Further evidence is needed in non-malignant disease hospital admit, QOL, altering trajectory (?) Care gaps exist. We must all seek to fill the gaps