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Palliative Care in End-Stage Lung Disease
Rebecca Colman, MD, FRCPCRespirology, University Heath Network
James Downar, MDCM, MHSc, FRCPCRespirology/Critical Care and Palliative Care, University Health Network
Canadian Hospice Palliative Care Association Learning InstitutePalliative Care in Advanced Lung Disease
Presenter Name Rebecca Colman, James Downar
Relationships with commercial interests:
No relationships with commercial interests
2
Faculty/Presenter Disclosure
• 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
3
Disclosure of Commercial Support
Canadian Hospice Palliative Care Association Learning InstitutePalliative Care in Advanced Lung Disease
• There are no biases to be mitigated.
Mitigating Bias
• 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.
Objectives
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
• 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
Case 1 - Mr. L
• Rx: tiotropium (long acting anti-cholinergic), salmeteral/fluticasone (inhaled corticosteroid/long acting beta-agonist, 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; 1005-12GOLD 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
Management• Smoking Cessation• Bronchodilators (SABA, SAAC, LABA,
LAAC)• ICS/LABA
• Exercise and Pulmonary Rehabilitation
• Vaccinations• Steroids• Antibiotics• ICS/LABA• Phosphodiesterase-4 inhibitors• Chronic Azithromycin
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
• Vaccinations• Steroids• Antibiotics• ICS/LABA• Phosphodiesterase-4 inhibitors• Chronic Azithromycin
OxygenSurgery (Lung Volume Reduction, Lung Transplantation)
O’Donnell et al. Can Respir J. 2007 14:Suppl B 5B-32B
• 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
Interstitial Lung Disease
Raghu et al. AJRCCM. 2011 183;788-824
• Prognosis variable• Median survival 2-3 yrs. from time of diagnosis
IPF
Raghu et al. AJRCCM. 2011 183;788-824
• Inflammation scarring and fibrosis of lung interstitium
Interstitial Lung Disease
Raghu et al. AJRCCM. 2011 183;788-824
• Inflammation scarring and fibrosis of lung interstitium
• Idiopathic (IPF) or secondary to systemic disease/exposure
• Presentation: chronic exertional dyspnea, cough, crackles, clubbing
Interstitial Lung Disease
Raghu et al. AJRCCM. 2011 183;788-824
• Prognosis variable• Median survival 2-3 yrs. from time of diagnosis
IPF
Raghu et al. AJRCCM. 2011 183;788-824
• 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
IPF Management
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):CD006322King et al. NEJM May 2014 (epub) IPFNET. NEJM May 2014 (epub)
• 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
Cystic Fibrosis
Brady et al. AJRCCM. 2013 187;680-689http://www.torontoadultcf.com
• 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
CF Management
Fusar-Poli P et al. Lung 2007;185:55-65.
• 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
Pulmonary Hypertension
Gaine & Lewis. Lancet 1998. 352; 719-725Galie et al. Eur Heart J. 2009. 30; 2493-2537
• 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
Pulmonary Hypertension
Gaine & Lewis. Lancet 1998. 352; 719-725Galie et al. Eur Heart J. 2009. 30; 2493-2537
• 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
PH Management
• 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
Dyspnea
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• Air hunger• Exertional shortness of breath• Chest tightness• Suffocation/panic
• Measurement• Dyspnea scores (ESAS, VAS, Borg)• HRQOL (St George’s Respiratory Questionnaire)• Exercise tolerance (6MWD)• Blood gas measurements
• Improvement vs. Stabilization of symptoms
• Main contributors• Increased load• Increased proportion of respiratory muscle
use• Increased ventilatory requirements• Spritual/existential distress• Anxiety
Dyspnea
Kamal et al. JPM 2011;10:1167-72.
Pulmonary Afferents
RespiratoryMuscles
Lung
Airway
(Effectiveness)Cortex
Limbic SystemDLPFCInsula
Brainstem(Chemoreceptors)
(Effort)
(Stimulus)
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
Dyspnea
Hallenbeck. J Pall Med 2012;15:1-6.
• Opioid• Anxiolytic• Antidepressant• Oxygen• Fan• Chest vibration• Meditation, relaxation therapy• (“Disease-modifying therapies”)
Management of Dyspnea
• Mechanism• Decreased sensitivity to
hypoxemia/hypercarbia• Increased ventilatory efficiency • Reduced minute volume (?)• Perhaps greater effectiveness in some
• Anxiety, • Worsening over time• Unpredictable
Opioids
Horton et al. Curr Opin Supp Pall Care 2010;4:92-96.
• 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)
Opioids
Jennings et al. CDSR 2001 (CD002066)Abernethy et al. BMJ 2003;327:523-8.
• 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)
Opioids
Currow et al. JPSM 2011;42:388-99.CTS Clinical Practice Guidelines 2011
• 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
Opioids - Fear
Currow et al. Eur J Palliat Care 2009.Gallagher R. Can Fam Physician 2010;56:544-6.
• 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
Opioids - Fear
Gallagher R. Can Fam Physician 2010;56:544-6.
• 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?)
Opioids – Dosing Guidelines
CTS Clinical Practice Guidelines 2011.ATS Clinical Policy Statement. AJRCCM 2008;177:912-27.
• 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 – We Suggest
• Intranasal/intrabuccal fentanyl
• Low dose- 25-50mcg
• Good for episodic dyspnea?
• Addiction potential?
Opioids – Novel Approaches
• Known survival benefit in hypoxemic COPD, IPF
• Reduced minute ventilation, dynamic hyperinflation
• Hypoxemic patients (CTS COPD- 2B)• Inconsistent improvement in dyspnea, exercise
tolerance• Negative Systematic Review- 8 studies, 144 patients
• Normoxemic patients • Not routinely beneficial but heterogeneous studies
• Individualized trial
Oxygen
Cranston et al. CDSR 2008;3:CD004769Uronis et al. CDSR 2011;6:CD006429
• Complex relationship between anxiety, panic and dyspnea
• Benzodiazepines• Inconsistent effect on QOL, dyspnea, exercise tolerance
• Buspirone (GAD)• Inconsistent benefit
• TCAs• Inconsistent benefit, side effects
• SSRIs• Inconsistent benefit, even in depressed pts.
• Not routinely recommended (2B)
Anxiolytics/Antidepressants
Simon et al. CDSR 2010;1:CD007354CTS Clinical Practice Guidelines 2011Kreuter et al. Respiration 2011;82:307-316.
• 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
Non-Pharmacologic Therapies - COPD
Bausewein et al. CDSR 2008;2:CD005623. Puhan et al. CDSR 2011;10:CD005305CTS Clinical Practice Guidelines 2011 Kruis et al. CDSR 2013;10:CD009437
• Walking aids (2B)• Pursed-lip breathing (2B)• Breathing training
• Improves dyspnea and recovery• http://www.youtube.com/user/ManagingSO
B
• “Insufficient evidence to recommend”
• Acupuncture, pressure, • Distractive auditory stimuli (music),
relaxation• Handheld fans • Counseling and support programs or
psychotherapy
Non-Pharmacologic Therapies - COPD
CTS Clinical Practice Guidelines 2011
• Etiology• Hypersensiti
ve cough reflex
• GERD• Upper airway
irritation
Cough
• Treatment• Opioids• Antitussive (e.g.
dextromethorphan)• Saline Rinse• Corticosteroids
• Nasal/inhaled/systemic
• Thalidomide?• Inhaled lidocaine?• Gabapentin?
Lee et al. Curr Opp Pulm Med 2011;17:348-54. Hope-Gill et al. AJRCCM 2003;168:995-1002.Horton et al. Thorax 2008;63:749. Lingerfelt et al. J Supp Onc 2007;5:301-2
• 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
Non-Invasive Ventilation
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 80-100%
• 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.Hilbert et al. Crit Care Med 2000;28:3185-90.Sinuff et al. Crit Care Med 2008;36:789-94.Mollica et al. Respiration 2010;79:209-15.
Levy M. CCM 2004;32:2002-7.Schettino G. CCM 2005;33:1976-82.Carillo et al. AJRCCM 2003;A862Nelson et al. CCM 2001; 30:A36
• Need for experienced staff• Clear goals and parameters
Non-Invasive Ventilation
• 15-40 L/min• Increased
ventilation• Positive pressure
3-5 cm H2O• Comfortable
• Heated, humidified• Improves dyspnea
• Little expertise required
High-Flow Nasal Cannula Oxygen
Ricard JD. Minerva Anestesiologica 2012;78:836-41.Image from Ward J. Resp Care 2013;58:98-122.
• “sustained and severe resting breathing discomfort that occurs in patients with advanced, often life-limiting illness and overwhelms the patient and caregivers’ ability to achieve symptom relief”
Dyspnea Crisis
Annals ATS 2013;10(5) S98-S106
Dyspnea Crisis
Annals ATS 2013;10(5) S98-S106
• Dyspnea, suffocation, hemoptysis
• Action plan• Opioids
• Parenteral morphine/hydromorphone
• Buccal/IN fentanyl
• Sedation• Methotrimeprazine• Midazolam 5mg SC/IV
• Manage the family…
Sudden Events
Challenges in Advance Care Planning for End-Stage Chronic Illness
James Downar, MDCM, MHSc, FRCPCLeah Steinberg, MA, MD, FCFPRebecca Colman, MD, FRCPC
Overview
• Prognostication- Challenges• Advance Care Planning and
Resources• Difficult Conversations
• ICDs• Mechanical Ventilation
• 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
HF Patients and Palliative Care Units in Canada – “Prognosis <3
months”
Downar et al. J Pall Med 2012;15:661-6.
• Bidirectional trajectory• Temporal v. Probabilistic survival
estimate• More outliers• Less dependence on oral intake,
bedbound status• Australian-modified KPS
Prognostic Challenges
Performance Status ToolsKPS 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 1996Slide courtesy of A. Weiss
• 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%
Prognostication- COPD
Celli BR et al. N Engl J Med 2004;350:1005-1012.
• 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
Prognostication - ILD
Slide courtesy of A. Weiss
More than 100 variables have been associated with mortality and re- hospitalization in heart
failure
GeneralAge, diabetes, sex, weight (BMI), etiology of HF, comorbidities (COPD, cirrhosis)
Laboratory markersNa, creatinine (and eGFR), urea, BUN, Hgb, % lymphocytes, uric acidLow HDLInsulin resistance
UrineAbluminuriaNGAL - neutrophil gelatinase associated lipocalin
BiomarkersBNP, NT pro BNP, troponin, CRP, cystatin C, GDF-15 (growth differentiation factor), serum cortisol, TNF, ET, NE, midregional-pro-adrenomedullin (MR-proADM), pro-apoptotic protein apoptosis-stimulating fragment (FAS)
MedicationIntolerance to ACEI, diuretic dose
FC IVEspecially if sustained > 90 days6 minute walk
Cardiopulmonary markersPeak VO2, % predicted, VE/VCO2, AT, workload, systolic BP < 130, HR recovery
Clinical Exam markersBP (admission and discharge), heart rate, JVP, +S3, cachexiaDepressionObstructive sleep apnea
Echo parametersEF, chamber size (LV, LA, RA), sphericity,
RNARVEF, LVEF
Recurrent hospitalizationsECG
IVCDHemodynamic markers
PA pressures, CO, CI, MVO2Endomyocardial biopsies
Microarrays transcriptomic biomarkersMarital status
WHAT SHOULD YOU DO ?????
Increasing age
Lower ejection fraction
Higher NYHA class
Hyponatremia
Elevated and rising BUN
Repeated admissions to hospital
Consistent Predictors- CHF
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 2004Hunt 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. 2013Adler et al. Circ 2009
Slide courtesy of A. Weiss
Slide courtesy of A. Weiss
• 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• Prognosis, fatality of disease• Unpredictable course• Types of acute situations – ACTION PLAN
• Eliciting goals and values• Type of care• Place of care
• Including surrogate DM• More burdened with decisions, less informed by
pt
• Decisional Readiness
Advance Care Planning
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.”• Is IV lasix “comfortable”?• Do you want to stay home no matter what?• Do home services provide HF care?
BMJ 2002;325: 929–33 JAMA 1998;279:1709–14
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 2013http://www.advancecareplanning.ca Arch Intern Med 2004;164:1999–2004
ACP Resource
www.advancecareplanning.ca
Deactivation rarely discussed with patients
• <45% even after DNR
• 8% shocked within minutes of death
Patients perceive a dependence on ICD
Action, not omission
ICD Deactivation
Am Heart J 2002;144:282–9Ann Intern Med 2004;141:835-8Mayo 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
Which of the following CF therapies would you continue in a palliative setting?A. InsulinB. Inhaled mucolyticsC. Airway clearance maneuversC. Oral antibioticsD. IV antibiotics
Palliative Challenges in CF
Which of the following PH therapies would you continue in a palliative setting?
A. Continuous prostacyclin infusionsB. Monitoring and adjustment of
diureticsC. Anticoagulation
Palliative Challenges in PH