Palliative Care in End-Stage Lung Disease
Rebecca Colman, MD, FRCPC
Respirology, University Heath Network
James Downar, MDCM, MHSc, FRCPC
Respirology/Critical Care and Palliative Care, University Health Network
Canadian Hospice Palliative Care Association Learning Institute
Palliative Care in Advanced Lung Disease
Faculty/Presenter Disclosure
Presenter Name
Rebecca Colman, James Downar
Relationships with commercial interests:
No relationships with commercial interests
2
Canadian Hospice Palliative Care Association Learning Institute
Palliative Care in Advanced Lung Disease
Disclosure of Commercial Support
•
There is no financial or in-kind support for this program
Potential for Conflict(s) of Interest
•
None of the presenters have received payment for the
presentation of this program
•
None of the products or programs discussed in this program
made financial or in-kind contributions
Mitigating Bias
•
There are no biases to be mitigated.
3
Objectives
• Be familiar with End-Stage Lung Diseases
and their treatment
• Understand the pathophysiology and
treatment of dyspnea in patients with
End-Stage Lung Disease.
• Appreciate the boundaries to PC in these
pts
• Initiate useful advance care planning for
patients with End-Stage Lung Disease.
Non-malignant Lung
Diseases
Four main non-malignant lung diseases
1.
Chronic Obstructive Pulmonary Disease
(COPD)
2. Interstitial Lung Disease
- Idiopathic Pulmonary Fibrosis (IPF) and others
3. Cystic Fibrosis (CF)
4. Pulmonary Hypertension (PH)
Case 1 - Mr. L
• 64 M. Retired construction worker
• Lives in subsidized housing
• Appearance: thin, muscle wasting, barrel
chest
• 45 pack year smoker
• Quit 2/12 months ago
• Over past year: 3 admissions for
bronchitis. Last admission 2 months ago
Case 1 - Mr. L
• Pulmonary function testing 1 year ago:
• FEV1 22% predicted
• Exercise capacity:
• Cannot ambulate short distances without SOB
• Difficulty with household chores and self care
• Daily cough productive of grey sputum ¼
cup
Case 1 - Mr. L
• Rx: tiotropium (long acting anticholinergic), salmeteral/fluticasone
(inhaled corticosteroid/long acting betaagonist, daily azithromycin
• PaO2 <55mmHg: prescribed O2 therapy
• Referred for pulmonary rehabilitation
• Returns 2 months later with ongoing
dyspnea
COPD
• Respiratory disorder largely 2° smoking
• Pathophysiology:
•
•
•
•
•
•
Progressive
partially/irreversible airway obstruction
lung hyperinflation
Mucous hypersecretion
Systemic manifestations
increasing frequency and severity of
exacerbations.
O’Donnell et al. Can Respir J. 2007 14:Suppl B 5B-32B
COPD
• Disease trajectory: gradual decline in health
status, increasing symptoms, punctuated by
acute exacerbations that are associated
with an increased risk of dying.
• Causes of death: progressive respiratory
failure, cardiovascular diseases,
malignancies
• Prognosis: variable. Multimodal assessment
(BODE index) better than degree of
obstruction
Celli et al. NEJM 2004: 350; 1005-12
GOLD guidelines 2013 update. Available at http://www.goldcopd.org/
Management
O’Donnell et al. Can Respir J. 2007 14:Suppl B 5B-32B
Management
•
•
•
Smoking Cessation
Bronchodilators (SABA, SAAC, LABA,
LAAC)
ICS/LABA
O’Donnell et al. Can Respir J. 2007 14:Suppl B 5B-32B
Management
•
•
•
Smoking Cessation
Bronchodilators (SABA, SAAC, LABA,
LAAC)
ICS/LABA
• Exercise and Pulmonary
Rehabilitation
O’Donnell et al. Can Respir J. 2007 14:Suppl B 5B-32B
•
•
•
•
•
•
Vaccinations
Steroids
Antibiotics
ICS/LABA
Phosphodiesterase-4 inhibitors
Chronic Azithromycin
Management
•
•
•
Smoking Cessation
Bronchodilators (SABA, SAAC, LABA,
LAAC)
ICS/LABA
• Exercise and Pulmonary
Rehabilitation
O’Donnell et al. Can Respir J. 2007 14:Suppl B 5B-32B
•
•
•
•
•
•
Vaccinations
Steroids
Antibiotics
ICS/LABA
Phosphodiesterase-4 inhibitors
Chronic Azithromycin
Management
•
•
•
Smoking Cessation
Bronchodilators (SABA, SAAC, LABA,
LAAC)
ICS/LABA
Oxygen
Surgery (Lung Volume Reduction, Lung Transplantation)
• Exercise and Pulmonary
Rehabilitation
O’Donnell et al. Can Respir J. 2007 14:Suppl B 5B-32B
Interstitial Lung Disease
• Inflammation  scarring and fibrosis of
lung interstitium
• Idiopathic (IPF) or secondary to systemic
disease/exposure
• IPF Prevalence 2-29/100 000
• Presentation: chronic exertional dyspnea,
cough, crackles, clubbing
Raghu et al. AJRCCM. 2011 183;788-824
IPF
Raghu et al. AJRCCM. 2011 183;788-824
•
•
Prognosis variable
Median survival 2-3 yrs. from time of diagnosis
Interstitial Lung Disease
• Inflammation  scarring and fibrosis of
lung interstitium
Raghu et al. AJRCCM. 2011 183;788-824
Interstitial Lung Disease
• Inflammation  scarring and fibrosis of
lung interstitium
• Idiopathic (IPF) or secondary to systemic
disease/exposure
• Presentation: chronic exertional dyspnea,
cough, crackles, clubbing
Raghu et al. AJRCCM. 2011 183;788-824
IPF
Raghu et al. AJRCCM. 2011 183;788-824
•
•
Prognosis variable
Median survival 2-3 yrs. from time of diagnosis
IPF Management
•
•
•
•
Lung transplantation
Pirfenidone
N-acetylcysteine?
Pulmonary rehabilitation
• Improved 6MWD, QOL
• Inconsistent benefit on dyspnea
•
Co-trimoxazole?
• Improved dyspnea, QOL scores
•
Sildenafil?
• Inconsistent evidence for improving 6MWD, QOL
Bajwah et al. Thorax 2013;68:867-79. Spruit et al. Respirology 2009;14:781-7.
Ryerson et al. JPSM 2012;43:771-82. Holland et al. CDSR 2008(4):CD006322
King et al. NEJM May 2014 (epub)
IPFNET. NEJM May 2014 (epub)
Cystic Fibrosis
• Defect in CFTR gene leading to impaired
chloride channel functioning
• Multisystem disease
• Median survival ~46 yrs
• Natural history: progressive decline in
lung function +/- exacerbations
• Death due to chronic lower respiratory
tract infection leading to respiratory
failure
Brady et al. AJRCCM. 2013 187;680-689
http://www.torontoadultcf.com
CF management
•
•
•
•
•
•
•
•
Airway clearance
Exercise
Inhaled Mucolytics
Chronic azithromycin (anti-inflammatory &
mucolytic)
Inhaled antibiotics
Oral antibiotics
IV antibiotics
Bronchodilators
CF Management
• Non-pulmonary treatment:
•
•
•
•
Nutritional supports
Diabetes management
Osteoporosis prevention
Psychosocial support
• Burden of Treatment
• Mean 7 treatments, 108 min per day
• Lung transplantation
Fusar-Poli P et al. Lung 2007;185:55-65.
Pulmonary Hypertension
• Mean pulmonary artery pressure
≥25mmHg
• Pulmonary arterial hypertension
• PH due to: left heart disease, hypoxic lung
disease, chronic thrombo-embolic disease,
other (metabolic disease, sarcoidosis,
myeloproliferative disorders…)
• Mean age at dx: 36
Gaine & Lewis. Lancet 1998. 352; 719-725
Galie et al. Eur Heart J. 2009. 30; 2493-2537
Pulmonary Hypertension
• Presentation: progressive dyspnea,
fatigue, weakness, chest pain, syncope,
signs of right heart failure
• Prognosis: untreated PAH
• WHO IV – 6 months
• WHO III – 2.5 years
• WHO I-II – 6 years
Gaine & Lewis. Lancet 1998. 352; 719-725
Galie et al. Eur Heart J. 2009. 30; 2493-2537
PH Management
• Diuretics, oxygen, supervised
rehabilitation, psychosocial support
• Medical therapy:
•
•
•
•
Ca2+ channel blockers
phosphodiesterase-5 inhibitors (oral)
endothelin antagonist (oral)
Prostacyclin analogues (IV or SC)
• Lung Transplantation
Dyspnea
• Up to 10% of PC consultations
• 4th most common reason for ER visit in PC
• Up to 89% of patients at EOLC, ~100% of
patients with lung disease
• Strong association with poor QOL,
prognosis
• Refractory in ~1/2 of end-stage COPD
Karmal et al. J Pall Med 2011;14:1167-72.
Currow et al. JPSM 2010;39:680-90.
Ikington et al. Respir Med 2004;98:439-45.
Dyspnea
•
Symptoms
•
•
•
•
•
Measurement
•
•
•
•
•
Air hunger
Exertional shortness of breath
Chest tightness
Suffocation/panic
Dyspnea scores (ESAS, VAS, Borg)
HRQOL (St George’s Respiratory Questionnaire)
Exercise tolerance (6MWD)
Blood gas measurements
Improvement vs. Stabilization of symptoms
Dyspnea
• Main contributors
•
•
•
•
•
Increased load
Increased proportion of respiratory muscle use
Increased ventilatory requirements
Spritual/existential distress
Anxiety
Kamal et al. JPM 2011;10:1167-72.
Limbic System
DLPFC
Insula
Dyspnea
Cortex
(Effectiveness)
(Effort)
Brainstem
Pulmonary
Afferents
(Chemoreceptors)
(Stimulus)
Airway
Lung
Respiratory
Muscles
Dyspnea
• “Neuromechanical Dissociation”
• Respiratory demand vs. ability to ventilate
• Current or anticipated
• Mild = reduce activity/metabolism
• Severe = panic = increased activity
• Hypoxemia
• Exertional dyspnea
• Responsive to O2
• Reduce activity/metabolism
Hallenbeck. J Pall Med 2012;15:1-6.
Management of Dyspnea
•
•
•
•
•
•
•
•
Opioid
Anxiolytic
Antidepressant
Oxygen
Fan
Chest vibration
Meditation, relaxation therapy
(“Disease-modifying therapies”)
Opioids
• Mechanism
• Decreased sensitivity to
hypoxemia/hypercarbia
• Increased ventilatory efficiency
• Reduced minute volume (?)
• Perhaps greater effectiveness in some
• Anxiety,
• Worsening over time
• Unpredictable
Horton et al. Curr Opin Supp Pall Care 2010;4:92-96.
Opioids
• Cochrane Review (2001) - WITHDRAWN
• Small (18 RCTs, max 19 pts)
• Single dose, usually measuring dyspnea
• Small benefit seen
• Crossover trial
• 20mg morphine SR per day
• VAS 6-10mm lower on 100mm scale (p<0.02)
Jennings et al. CDSR 2001 (CD002066)
Abernethy et al. BMJ 2003;327:523-8.
Opioids
• Dose increment + pharmacovigilance
study
• Started morphine SR 10mg/d
• Increased to 20, 30mg in nonresponders
• 62% had response (avg 35% improvement in VAS)
• 33% maintained at 3 months
• No respiratory depression/hospitalizations
• CTS Recommendations for COPD
• Oral opioids for refractory dyspnea (2C)
Currow et al. JPSM 2011;42:388-99.
CTS Clinical Practice Guidelines 2011
Opioids - Fear
• Appropriate opioid doses do not cause
respiratory depression (>10 studies)
• Steady state vs. increases
• Low doses (10-30mg/d) not associated
with resp. depression in COPD
Currow et al. Eur J Palliat Care 2009.
Gallagher R. Can Fam Physician 2010;56:544-6.
Opioids - Fear
• In advanced illness, no relationship
between time of death and
• Opioid dose
• Changes in dose
• Sedative use
• Clinician discomfort
• Cultural stigma
• Addiction
• Almost no risk if no hx of addiction, psych history,
abuse, >45
Gallagher R. Can Fam Physician 2010;56:544-6.
Opioids – Dosing
Guidelines
• CTS Suggested Protocol
• Morphine IR 0.5mg BID x2d, increase to q4h over 1
wk
• Increase by 1mg q4h every week until effective
• Switch to Morphine SR q12h when stable x2wks
• Switch to hydromorphone if side effects
• ATS Clinical Policy Statement
• Morphine 5-10mg PO Q4H (PRN?)
• Hydromorphone 2-4mg Q4H (PRN?)
CTS Clinical Practice Guidelines 2011.
ATS Clinical Policy Statement. AJRCCM 2008;177:912-27.
Opioids – We Suggest
• Start morphine 5mg q1h PRN (2.5mg if
naïve)
• Encourage to take 1 dose as test
• If well-tolerated, 2 options
• Continue using PRN as above
• Encourage to start Morphine CR 10mg BID
• Increase morphine CR slowly- add 5mg BID every few
days
• ALWAYS titrate to effect.
• Anticipate constipation and nausea
• Reassess frequently
• Worsening dyspnea may suggest pneumonia
Opioids – Novel
Approaches
• Intranasal/intrabucca
l fentanyl
• Low dose- 25-50mcg
• Good for episodic
dyspnea?
• Addiction potential?
Oxygen
•
•
•
Known survival benefit in hypoxemic COPD, IPF
Reduced minute ventilation, dynamic
hyperinflation
Hypoxemic patients (CTS COPD- 2B)
•
•
•
Normoxemic patients
•
•
Inconsistent improvement in dyspnea, exercise tolerance
Negative Systematic Review- 8 studies, 144 patients
Not routinely beneficial but heterogeneous studies
Individualized trial
Cranston et al. CDSR 2008;3:CD004769
Uronis et al. CDSR 2011;6:CD006429
Anxiolytics/Antidepressa
nts
•
•
Complex relationship between anxiety, panic
and dyspnea
Benzodiazepines
•
•
Buspirone (GAD)
•
•
Inconsistent benefit, side effects
SSRIs
•
•
Inconsistent benefit
TCAs
•
•
Inconsistent effect on QOL, dyspnea, exercise
tolerance
Inconsistent benefit, even in depressed pts.
Not routinely recommended (2B)
Simon et al. CDSR 2010;1:CD007354
CTS Clinical Practice Guidelines 2011
Kreuter et al. Respiration 2011;82:307-316.
Non-Pharmacologic
Therapies - COPD
• Pulmonary rehabilitation (COPD, IPF)
• Reduce admissions, mortality
• Improve HRQOL, exercise capacity
• Neuromuscular Electrical Muscle Stimulation
(2B)
• 4-6 weeks, improves dyspnea + performance
• Chest wall vibration (2B)
• Integrated disease management
• Reduces admissions
• Improves QOL and exercise capacity
Bausewein et al. CDSR 2008;2:CD005623.
CTS Clinical Practice Guidelines 2011
Puhan et al. CDSR 2011;10:CD005305
Kruis et al. CDSR 2013;10:CD009437
Non-Pharmacologic
Therapies - COPD
• Walking aids (2B)
• Pursed-lip breathing (2B)
• Breathing training
• Improves dyspnea and recovery
• http://www.youtube.com/user/ManagingSOB
• “Insufficient evidence to recommend”
•
•
•
•
Acupuncture, pressure,
Distractive auditory stimuli (music), relaxation
Handheld fans
Counseling and support programs or
psychotherapy
CTS Clinical Practice Guidelines 2011
Cough
• Etiology
•
• Hypersensitive
cough reflex
• GERD
• Upper airway
irritation
Treatment
•
•
•
•
•
•
•
•
Lee et al. Curr Opp Pulm Med 2011;17:348-54.
Horton et al. Thorax 2008;63:749.
Opioids
Antitussive (e.g.
dextromethorphan)
Saline Rinse
Corticosteroids
Nasal/inhaled/syste
mic
Thalidomide?
Inhaled lidocaine?
Gabapentin?
Hope-Gill et al. AJRCCM 2003;168:995-1002.
Lingerfelt et al. J Supp Onc 2007;5:301-2
Non-Invasive Ventilation
• Reduces risk of intubation and mortality
• Commonly used for COPD patients with
“do not intubate order”
• Symptomatic benefit
• Hospital survival rate up to 70%
• 1-year survival rate up to 30%
• Survivors report no deterioration in
HRQOL at 90 days
Sinuff et al. Crit Care Med 2008;36:789-94.
Schettino et al. Crit Care Med 2005;33:1976-82.
Chu et al. Crit Care Med 2004;32:372-7.
Azoulay et al. Intensive Care Med 2013;39:292-301.
Noninvasive Ventilation
• Overall mortality of NIV in “DNR” ~50%
• Cardiogenic pulmonary edema 25-39%
• COPD 38-48%
• Advanced cancer 77-85%
• Mortality of Acute Resp Failure in IPF 80100%
• Short trial of NIV selects survivors
• Treats easily reversible problems
• Buys time to make decision
• Palliative intervention?
Cuomo et al. Palliative Medicine 2004;18:602-10. Levy M. CCM 2004;32:2002-7.
Hilbert et al. Crit Care Med 2000;28:3185-90.
Schettino G. CCM 2005;33:1976-82.
Sinuff et al. Crit Care Med 2008;36:789-94.
Carillo et al. AJRCCM 2003;A862
Mollica et al. Respiration 2010;79:209-15.
Nelson et al. CCM 2001; 30:A36
Non-Invasive Ventilation
• Need for experienced staff
• Clear goals and parameters
High-Flow Nasal Cannula
Oxygen
•
•
•
•
15-40 L/min
Increased
ventilation
Positive pressure 35 cm H2O
Comfortable
•
•
•
Heated, humidified
Improves dyspnea
Little expertise
required
Ricard JD. Minerva Anestesiologica 2012;78:836-41.
Image from Ward J. Resp Care 2013;58:98-122.
Dyspnea Crisis
•
“sustained and severe resting breathing discomfort
that occurs in patients with advanced, often lifelimiting illness and overwhelms the patient and
caregivers’ ability to achieve symptom relief”
Annals ATS 2013;10(5) S98-S106
Dyspnea Crisis
Annals ATS 2013;10(5) S98-S106
Sudden Events
•
•
Dyspnea, suffocation,
hemoptysis
Action plan
• Opioids
•
•
Parenteral
morphine/hydromorpho
ne
Buccal/IN fentanyl
• Sedation
•
•
•
Methotrimeprazine
Midazolam 5mg SC/IV
Manage the family…
Challenges in Advance Care Planning
for End-Stage Chronic Illness
James Downar, MDCM, MHSc, FRCPC
Leah Steinberg, MA, MD, FCFP
Rebecca Colman, MD, FRCPC
Overview
• Prognostication- Challenges
• Advance Care Planning and
Resources
• Difficult Conversations
•
•
ICDs
Mechanical Ventilation
HF Patients and Palliative Care Units
in Canada – “Prognosis <3 months”
• HF patients rarely admitted to PCUs
•
•
79% Cancer
4.5% “Heart disease”, 2.2% Respiratory disease
• Compared with cancer, “heart disease”
patients more disabled, closer to death…
•
•
•
Lower mean PPS
Shorter median survival
BUT…shorter mean waiting time
• Many HF patients rejected, never referred,
or referred too late
Downar et al. J Pall Med 2012;15:661-6.
Prognostic Challenges
•
•
•
•
Bidirectional trajectory
Temporal v. Probabilistic survival estimate
More outliers
Less dependence on oral intake,
bedbound status
• Australian-modified KPS
Performance Status Tools
KPS
PPS
AKPS
100%
Normal, no evidence of
disease, no complaints
Normal activity & work, no evidence of
disease
Normal; no complaints; no
evidence of disease
90%
Able to carry on normal activity;
minor signs or symptoms
Normal activity & work, some evidence
of disease
Able to carry on normal activity;
minor signs or symptoms
80%
Normal activity w/effort; some
signs or symptoms of disease
Normal activity with effort, some
evidence of disease
Normal activity with effort; some
signs or symptoms of disease
70%
Cares for self; unable to carry
on normal activity or to do
active work
Cares of self, normal or reduced intake
Cares for self; unable to carry on
normal activity or to do active
work
60%
Requires occasional
assistance but is able to care
for most of his needs
Unable to do hobby/ housework,
normal or reduced intake, occ.
assistance needed, maybe confused.
Requires occasional assistance
but is able to care for most of his
needs
50%
Requires considerable
assistance and frequent
medical care
Mainly sit / lie, considerable
assistance needed, maybe confused
Requires considerable
assistance and frequent medical
care
40%
Disabled; requires special care
and assistance
Unable to do most activity, mainly in
bed, mainly assistance, maybe drowsy
+/- confused
In bed more than 50% of the
time
30%
Severely disabled; hospitaliz’n
necessary; active supportive
treatment is necessary
Unable to do any activity, totally
bedbound, total care, maybe drowsy
+/- confused
Almost completely bedfast
20%
Very sick; hospitalization
necessary; active supportive
treatment is necessary
Totally bedbound, total care, minimal
intake to sips, maybe drowsy +/confused
Totally bedfast and requiring
extensive nursing care by
professionals and/or family
10%
Moribund; fatal processes
progressing rapidly
Totally bedbound, total care, mouth
care only, drowsy or coma +/confusion
Comatose or barely rousable
Common Prognostic
Indicators
Survival <6m if 2-4 of…
•
•
•
•
•
•
Poor performance status
Advanced Age
Malnutrition
Comorbid illness
Increasing organ dysfunction
Hospitalization for acute decompensation
Salpeter et al. Amer J Med 2012;125:512
Slide courtesy of A. Weiss
COPD Prognostication
Indicators
Ambulatory patients
• FEV1 < 35% predicted value = 25% die
within 2 years, 55% die within 4 years
Hospitalized patients
• PaCO2 >50
• 10% will die on current admission
• 33% will die within 6 months
• 43% will die within 1 year
Connors et al, Am J Resp Crit Care Med 1996
Slide courtesy of A. Weiss
Prognostication - COPD
•
Factors associated with increased mortality:
•
•
•
•
•
•
•
•
•
•
•
FEV1 <30% predicted
Hypoxia (PaO2 <55)
Low BMI
Advanced age
Severe dyspnea with activity limitation
Decreased exercise capacity
Recurrent hospitalizations (esp. with hypercapnic resp failure)
Depression
Other chronic co-morbid illnesses
Pulmonary hypertension related to COPD
BODE index >7
Prognostication- COPD
• BODE index: BMI, Obstruction, Dyspnea,
Exercise
•
4 year survival: 0-2 Points: 80% 3-4 Points:
67% 5-6 Points: 57% 7-10 Points: 18%
Celli BR et al. N Engl J Med 2004;350:1005-1012.
Prognostication - ILD
• Factors associated with increased
mortality:
• Baseline factors
• Level of dyspnea
• Diffusion capacity for carbon monoxide (DLCO)
<40% predicted
• Desaturation with exercise
• Pulmonary hypertension
• Longitudinal factors
• Increasing dyspnea
• Decline in vital capacity and DLCO over time
• Worsening fibrosis on CT scan
Slide courtesy of A. Weiss
More than 100 variables have been
associated with mortality and rehospitalization in heart failure
General
Age, diabetes, sex, weight (BMI), etiology of
HF, comorbidities (COPD, cirrhosis)
Laboratory markers
Na, creatinine (and eGFR), urea, BUN,
Hgb, % lymphocytes,
uric acid
Low HDL
Insulin resistance
Urine
Abluminuria
NGAL - neutrophil gelatinase associated
lipocalin
Biomarkers
BNP, NT pro BNP, troponin, CRP, cystatin C,
GDF-15 (growth differentiation factor), serum
cortisol, TNF, ET, NE, midregional-proadrenomedullin (MR-proADM), pro-apoptotic
protein apoptosis-stimulating fragment (FAS)
Medication
Intolerance to ACEI, diuretic dose
FC IV
Especially if sustained > 90 days
6 minute walk
Cardiopulmonary markers
Peak VO2, % predicted, VE/VCO2, AT,
workload, systolic BP < 130, HR recovery
Clinical Exam markers
BP (admission and discharge), heart rate, JVP,
+S3, cachexia
Depression
Obstructive sleep apnea
Echo parameters
EF, chamber size (LV, LA, RA), sphericity,
RNA
RVEF, LVEF
Recurrent hospitalizations
ECG
IVCD
Hemodynamic markers
PA pressures, CO, CI, MVO2
Endomyocardial biopsies
Microarrays transcriptomic biomarkers
Marital status
WHAT SHOULD YOU DO ?????
Consistent Predictors- CHF
Increasing age
Lower ejection fraction
Higher NYHA class
Hyponatremia
Elevated and rising BUN
Repeated admissions to hospital
From Selby, D. 2008
Consistent Predictors- CHF
Significant cardiac dysfunction with:
•
•
•
•
Marked dyspnea and fatigue
End organ hypo-perfusion at rest
Symptoms with minimal exertion
Maximal medical therapy
AHA Stage D – refractory symptoms
Goodlin et al, Journal of Cardiac Failure Vol. 10 No. 3 2004
Hunt SA et al JACC 2001;38:2101–13.
Heart Failure Models
EFFECT model/HFRSS (Lee et al, JAMA 2003)
• Validated in Ontario hospitals
• 30 day and 1 –yr mortality
•
http://www.ccort.ca/Research/CHFRiskModel.aspx
Seattle HF model (Levy et al, Circulation 2006)
• 1,2,3 yr survival estimate
• Clinical, lab, medications and device
therapies
• Needs further validation
• www.seattleheartfailuremodel.org
Circ Heart Fail. 2013
Adler et al. Circ 2009
Slide courtesy of A. Weiss
Slide courtesy of A. Weiss
Advance Care Planning
• Normalize conversation
• Plan A vs. Plan B
• Wishing for something vs. planning for something
• “What is most important to you?”
• Explore- fears, concerns
• Acknowledge and validate
• Support
• Separate message from messenger
• Non-abandonment
• Comanagement with respirologist, cardiologist
Advance Care Planning
•
Education
•
•
•
•
Eliciting goals and values
•
•
•
Type of care
Place of care
Including surrogate DM
•
•
Prognosis, fatality of disease
Unpredictable course
Types of acute situations – ACTION PLAN
More burdened with decisions, less informed by pt
Decisional Readiness
More reading…
Advanced Care Planning
• Similar to “typical” discussions except…
•
•
•
•
Less involved in decision making than cancer
Don’t associate symptoms with health status
History of recovery from exacerbations
History of helpful admissions, unlike oncology
• Need education before goals clear
• How to translate goals into action
•
“I want comfort care at home.”
•
•
•
BMJ 2002;325: 929–33
JAMA 1998;279:1709–14
Is IV lasix “comfortable”?
Do you want to stay home no matter what?
Do home services provide HF care?
Advanced Care Planning
More limited access to supports that depend
on prognosis
•
•
Home Care
Home Palliative Care
Limited availability of advanced therapies
outside acute hospital setting
•
•
Parenteral diuretics
Inotropes
Advanced Care Planning
Action plans for unforeseen events
•
“Things will not always go according to plan…”
•
Sequential nature of decisions
Make sure the family is present
•
Family member concerns can be a major
barrier to discussion
Aleksova et al. [Abstract] CCC Toronto, October 2013
http://www.advancecareplanning.ca Arch Intern Med
2004;164:1999–2004
ACP Resource
www.advancecareplanning.ca
ICD Deactivation
Deactivation rarely
discussed with patients
• <45% even after DNR
• 8% shocked within
minutes of death
Patients perceive a
dependence on ICD
Action, not omission
Am Heart J 2002;144:282–9
Ann Intern Med 2004;141:835-8
Mayo Clin Proc 2011;86:493-500
ICD Deactivation - Pearls
Distinguish pacing from defibrillation
Arrhythmic death vs. “Pump failure”
QOL will not improve
“I would recommend that…”
•
•
“People who benefit from ICDs are…”
“People who do NOT benefit from ICDs are…”
Emphasize ongoing care
ICD Deactivation
Contact ICD clinic for information about
deactivation
Think about this in advance of last hours
Find out where magnets are kept
Palliative Challenges in CF
Which of the following CF therapies would
you continue in a palliative setting?
A. Insulin
B. Inhaled mucolytics
C. Airway clearance maneuvers
C. Oral antibiotics
D. IV antibiotics
Palliative Challenges in PH
Which of the following PH therapies would
you continue in a palliative setting?
A. Continuous prostacyclin infusions
B. Monitoring and adjustment of diuretics
C. Anticoagulation