JHF 2008. Advanced Lung Disease: Palliative and Terminal Care John Hansen-Flaschen Professor of Medicine University of Pennsylvania Philadelphia, Pennsylvania.

JHF 2008

Advanced Lung Disease: Palliative and Terminal Care

John Hansen-FlaschenProfessor of MedicineUniversity of PennsylvaniaPhiladelphia, Pennsylvania

American Thoracic Society

Ischemic heart diseaseCerebrovascular diseaseLower resp infectionDiarrheal diseasePerinatal disordersCOPDTuberculosisMeaslesRoad traffic accidentsLung cancer

6th

1990

COPD Mortality WorldwideCOPD Mortality Worldwide

- & . 1997 Murray Lopez Lancet modified from GOLD2005 slide set

Ischemic heart diseaseCerebrovascular diseaseLower resp infectionDiarrheal diseasePerinatal disordersCOPDTuberculosisMeaslesRoad traffic accidentsLung cancer

Stomach CancerHIVSuicide

6th

3rd

- & . 1997 Murray Lopez Lancet 2005 modified from GOLD slide set

1990 2020

COPD Mortality WorldwideCOPD Mortality Worldwide

United States Mortality 2006Top Five Medical Causes, per 100,000United States Mortality 2006Top Five Medical Causes, per 100,000

199.4180.8

51.140.4 38.5

00

5050

100100

150150

200200

250250

300300Heart DiseaseHeart Disease

CancerCancer

StrokeStroke

ChronicLung DiseaseChronicLung Disease

AccidentsAccidents

- U.S. National Vital Statistics Report, NCHS, 2008.

United States Mortality 2006Top Five Medical Causes, per 100,000United States Mortality 2006Top Five Medical Causes, per 100,000

199.4180.8

51.140.4 38.5

00

5050

100100

150150

200200

250250

300300Heart DiseaseHeart Disease

CancerCancer

StrokeStroke

ChronicLung DiseaseChronicLung Disease

AccidentsAccidents

- U.S. National Vital Statistics Report, NCHS, 2008.

124,614

Burden of COPD in the USBurden of COPD in the US

• Between 2000 and 2005, COPD was the underlying cause of death for 718,077 persons.

• In 2005, COPD was the underlying cause of death for approximately1 person in 20.

- Morbidity Mortality Weekly Report, November 17 2008 / 57:1229.

American Thoracic Society Documents

An Official American Thoracic Society Clinical Policy Statement:

Palliative Care for Patients with Respiratory Diseases and Critical Illnesses

Paul N. Lanken, Peter B. Terry, Horace M. DeLisser, Bonnie F. Fahy,John Hansen-Flaschen, John E. Heffner, Mitchell Levy, Richard A. Mularski, Molly L. Osborne, Thomas J. Prendergast, Graeme Rocker, William J. Sibbald, Benjamin Wilfond and James R. Yankaskason behalf of the ATS End-of-Life Care Task Force

American Journal of Respiratory and Critical Care MedicineVol 177. pp. 912-927, (2008).© 2008 American Thoracic Society

Palliative care aims to prevent and relieve suffering by early identification, assessment, and treatment of pain and other types of physical, psychological, emotional, and spiritual distress.

- World Health Organization

Palliative Care

Current Concepts: Palliative CareCurrent Concepts: Palliative CareCurrent Concepts: Palliative CareCurrent Concepts: Palliative Care

- Lanken PN et al. Am J Respir Crit Care Med 177:912, 2008.

Current Concepts: Palliative CareCurrent Concepts: Palliative CareCurrent Concepts: Palliative CareCurrent Concepts: Palliative Care

- Lanken PN et al. Am J Respir Crit Care Med 177:912, 2008.

Current Concepts: Palliative CareCurrent Concepts: Palliative CareCurrent Concepts: Palliative CareCurrent Concepts: Palliative Care

- Lanken PN et al. Am J Respir Crit Care Med 177:912, 2008.

Current Concepts: Palliative CareCurrent Concepts: Palliative CareCurrent Concepts: Palliative CareCurrent Concepts: Palliative Care

- Lanken PN et al. Am J Respir Crit Care Med 177:912, 2008.

Case #1A 74-year-old woman was transferred to the medical intensive care unit for further management of respiratory failure associated with:

• Very severe chronic obstructive lung disease• Severe mitral stenosis and coronary artery disease• Diabetes

Case #1She lived alone.

Over the past 6 years, her exercise tolerance had declined until she was unable to move beyond her bed and a nearby chair and had frequent experiences of dyspnea at rest.

In the past year, she was hospitalized repeatedly for fluid overload or respiratory distress.

Case #1In the ICU, she became continuously dependent on mechanical ventilation, vasopressors and hemodialysis. Her mental status waxed and waned.

Two of 8 children visited regularly and insisted that “everything be done” to prolong her life. They repeatedly objected to the use of pain and sedating medications.

The woman survived in the ICU for 9 months until she died of septic shock despite maximal life-supporting therapy.

• Alleviation of Distress

• Counseling and Coordination of Care

Palliative CareAdvanced Lung Disease

• Alleviation of Distress

• Counseling and Coordination of Care

Palliative CareAdvanced Lung Disease

• Dyspnea• Cough• Psychological Distress

Anxiety/Panic Depression Cognitive Impairment Delirium

Distress inAdvanced Lung disease

• Dyspnea• Cough• Psychological Distress

o Anxiety/Panico Depressiono Cognitive Impairmento Delirium

Distress inAdvanced Lung disease

The subjective sensation ofbreathing discomfort.

- American Thoracic Society Statement on Dyspnea,1998.

Dyspnea

The subjective sensation ofbreathing discomfort.

- American Thoracic Society Statement on Dyspnea,1998.

Dyspnea

- Shumway NM et al. Respir Med 102:27, 2008.

Physician vs PatientPerception of Dyspnea in

Severely Ill Hospitalized Patients

Dyspnea

• Increased Work or Effort

• Chest Tightness• Air Hunger

at least three types

Dyspnea

• Increased Work or Effort

• Chest Tightness• Air Hunger

at least three types

The conscious perception of the urge to breathe. The frightening or threatening sensation of not getting enough air.

Air Hunger

Dyspnea

• Dyspnea on Exertion• Paroxysmal Dyspnea• Sustained Dyspnea at Rest

at least three situations

Dyspnea

• Dyspnea on Exertion• Paroxysmal Dyspnea• Sustained Dyspnea at Rest

at least three situations

Dyspnea

• Dyspnea on Exertion• Paroxysmal Dyspnea• Sustained Dyspnea at Rest

at least three situations

Strong evidence supports treatmentof dyspnea on exertion with:

b-agonists opioids oxygen pulmonary rehabilitation

Treatment forDyspnea on Exertion in COPD

Conclusions of a systematic reviewAmerican College of Physicians

Clinical Efficacy Assessment Subcommittee

- Lorenz KA et al. Ann Intern Med. 148:147, 2008.

Strong evidence supports treatmentof dyspnea on exertion with:

o -agonistso opioidso oxygeno pulmonary rehabilitation

Treatment forDyspnea on Exertion in COPD

Conclusions of a systematic reviewAmerican College of Physicians

Clinical Efficacy Assessment Subcommittee

- Lorenz KA et al. Ann Intern Med. 148:147, 2008.

Opioids for DyspneaOpioids for Dyspnea

- Jennings A-L, et al. Thorax; 57:939, 2002.

Strong evidence supports treatmentof dyspnea on exertion with:

b-agonists opioids oxygen pulmonary rehabilitation

Treatment forDyspnea on Exertion in COPD

Conclusions of a systematic reviewAmerican College of Physicians

Clinical Efficacy Assessment Subcommittee

- Lorenz KA et al. Ann Intern Med. 148:147, 2008.

Oxygen forExertional Dyspnea

For desaturators, distance walked in6 min increased 22%and Borg scale dyspnea decreased 36% with supplemental oxygen,

For non desaturators, Borg scale dyspnea decreased 47%, but distance walkeddid not improve.

- Jolly EC et al. Chest. 20:437, 2001.

Oxygen forExertional Dyspnea

For desaturators, distance walked in6 min increased 22%and Borg scale dyspnea decreased 36% with supplemental oxygen,

For non desaturators, Borg scale dyspnea decreased 47%, but distance walkeddid not improve.

- Jolly EC et al. Chest. 20:437, 2001.

Strong evidence supports treatmentof dyspnea on exertion with:

b-agonists opioids oxygen pulmonary rehabilitation

Treatment forDyspnea on Exertion in COPD

Conclusions of a systematic reviewAmerican College of Physicians

Clinical Efficacy Assessment Subcommittee

- Lorenz KA et al. Ann Intern Med. 148:147, 2008.

Dyspnea

• Dyspnea on Exertion• Paroxysmal Dyspnea• Sustained Dyspnea at Rest

at least three situations

Dyspnea

• Dyspnea on Exertion• Paroxysmal Dyspnea• Sustained Dyspnea at Rest

at least three situations

• supplemental oxygen• opioids and

benzodiazepines• non-invasive mechanical

ventilation• intubation for deep

sedation

Palliation ofSustained Dyspnea at Rest

• supplemental oxygen• opioids and

benzodiazepines• non-invasive mechanical

ventilation• intubation for deep

sedation

Palliation ofSustained Dyspnea at Rest

• supplemental oxygen• opioids and

benzodiazepines• non-invasive mechanical

ventilation• intubation for deep

sedation

Palliation ofSustained Dyspnea at Rest

Morphine and MidazolamMorphine and Midazolamfor Dyspneafor Dyspnea

Morphine and MidazolamMorphine and Midazolamfor Dyspneafor Dyspnea

- Navigante A, et al. J Pain Symptom Management 57:939, 2002.

Mo MorphineMi MidazolamMM Morphine and Midazolam

Terminally ill cancer patients at 24 hours

Percent experiencing pain relief

• supplemental oxygen• opioids and

benzodiazepines• non-invasive mechanical

ventilation• intubation for deep

sedation

Palliation ofSustained Dyspnea at Rest

NoninvasiveVentilatory Support for Dyspnea at Rest

NoninvasiveVentilatory Support for Dyspnea at Rest

Exacerbation of COPDExacerbation of COPDNon-invasive Mechanical VentilationNon-invasive Mechanical Ventilation

for Relief of Dyspnea at Restfor Relief of Dyspnea at Rest

Exacerbation of COPDExacerbation of COPDNon-invasive Mechanical VentilationNon-invasive Mechanical Ventilation

for Relief of Dyspnea at Restfor Relief of Dyspnea at Rest

- Keenan SP, et al. Resp Care 50:610, 2005.

only 12 of 25randomized tointermittent NIMV(BiPAP)completed 3 days of treatment

• supplemental oxygen• opioids and

benzodiazepines• non-invasive mechanical

ventilation• intubation for deep

sedation

Palliation ofSustained Dyspnea at Rest

Mechanically Ventilated Patients

Shortness of Breath 11%

Mild 8%

Moderate 2%

Severe 1%

No Shortness of Breath 89%

- Karampela I, et al. Respiratory Care 47:1158, 2002.

Are you short of breath right now?

• Dyspnea• Cough• Psychological Distress

Anxiety/Panic Depression Cognitive impairment Delirium

Distress inAdvanced Lung disease

Steroids for Cough inSteroids for Cough inIdiopathic Pulmonary FibrosisIdiopathic Pulmonary Fibrosis

Steroids for Cough inSteroids for Cough inIdiopathic Pulmonary FibrosisIdiopathic Pulmonary Fibrosis

- Hope-Gill BDM, et al. AJRCCM 168:996, 2003.

• Dyspnea• Cough• Psychological Distress

o Anxiety/Panico Depressiono Cognitive Impairmento Delirium

Distress inAdvanced Lung disease

Prevalence of anxiety & depressionPrevalence of anxiety & depressionin chronic breathing disordersin chronic breathing disorders

Prevalence of anxiety & depressionPrevalence of anxiety & depressionin chronic breathing disordersin chronic breathing disorders

204 outpatients at the Houston VA 204 outpatients at the Houston VA

- Kunik ME, et al. Chest 127:1205, 2005.

anxiety 51%

depression 39%

both 26%

either of both 65%

COPD in Patients withSerious Mental IllnessesCOPD in Patients with

Serious Mental Illnesses

National Health & Nutrition Examination Study III National Health & Nutrition Examination Study III

Mental Illness Control

Chronic Bronchitis

19.5% 6.1%

Emphysema 7.9% 1.5%

- Himelhoch S, et al. Am J Psychiat 161:2317, 2004

PRIME-MD ScreenPRIME-MD Screenfor Anxiety and Depressionfor Anxiety and Depression

PRIME-MD ScreenPRIME-MD Screenfor Anxiety and Depressionfor Anxiety and Depression

DepressionIn the past month have you been bothered a

lot by:1. little interest or pleasure in doing things?2. feeling down, depressed or hopeless?

AnxietyIn the past month, have you been bothered a lot

by:3. “nerves” or feeling anxious or on edge?4. worrying about a lot of different things?5. During the last month have you had an

anxiety attack?

1 positive response: highly sensitiveall positive responses: highly specific

- Kunik ME et al. Psychosomatics 48:1. 2007.

Treatment of Anxiety and DepressionTreatment of Anxiety and Depressionin Severe COPDin Severe COPD

Treatment of Anxiety and DepressionTreatment of Anxiety and Depressionin Severe COPDin Severe COPD

• Few small studies have reported conflicting results for the treatment of anxiety with buspirone and depression with antidepressants.

• Similarly mixed results for treatment of anxiety with cognitive behavioral therapy.

• Several studies have reported benefits of pulmonary rehabilitation with education sessions for treatment of anxiety and depression.

• Few small studies have reported conflicting results for the treatment of anxiety with buspirone and depression with antidepressants.

• Similarly mixed results for treatment of anxiety with cognitive behavioral therapy.

• Several studies have reported benefits of pulmonary rehabilitation with education sessions for treatment of anxiety and depression.

- Hill, K, et al. E Respir J.; 31:667, 2008.

Evidence Basis

Treatment ofTreatment ofAnxiety and DepressionAnxiety and Depression

in Severe COPDin Severe COPD

Treatment ofTreatment ofAnxiety and DepressionAnxiety and Depression

in Severe COPDin Severe COPD

• patient education

• antidepressants: sertraline, bupropion, fluoxetine

• buspirone or a benzodiazepine in moderate doses

• cognitive and behavioral therapy

• patient education

• antidepressants: sertraline, bupropion, fluoxetine

• buspirone or a benzodiazepine in moderate doses

• cognitive and behavioral therapy

- Brenes, GA. Psychosomatic Med 65:963, 2003.

• Alleviation of Distress

• Counseling and Coordination of Care

Palliative CareAdvanced Lung Disease

• Alleviation of Distress

• Counseling and Coordination of Care …

…near the end of life

Palliative CareAdvanced Lung Disease

Barriers to DiscussingBarriers to DiscussingEnd-of-Life CareEnd-of-Life Care

Barriers to DiscussingBarriers to DiscussingEnd-of-Life CareEnd-of-Life Care

• I’d rather concentrate on staying alive than talk about death.

• I’m not sure which physician will be taking care of me if I get very sick.

• I’d rather concentrate on staying alive than talk about death.

• I’m not sure which physician will be taking care of me if I get very sick.

commonly endorsed by patients

- Knauft E, et al. Chest 127:2188, 2005.

Barriers to DiscussingBarriers to DiscussingEnd-of-Life CareEnd-of-Life Care

Barriers to DiscussingBarriers to DiscussingEnd-of-Life CareEnd-of-Life Care

• There is too little time during our appointments to discuss everything we should (57%).

• I worry that discussing end-of-life care will take away hope(20%).

• There is too little time during our appointments to discuss everything we should (57%).

• I worry that discussing end-of-life care will take away hope(20%).

- Knauft E, et al. Chest 127:2188, 2005.

commonly endorsed by patients

Advanced PlanningAdvanced Planningfor End of Life Carefor End of Life CareAdvanced PlanningAdvanced Planningfor End of Life Carefor End of Life Care

• Offer an honest prognosis

• Promote, document and coordinate advanced planning for health care

• Offer an honest prognosis

• Promote, document and coordinate advanced planning for health care

Advanced Planningfor End of Life CareAdvanced Planningfor End of Life Care

• Offer an honest prognosis

• Promote, document and coordinate advanced planning for health care

• Offer an honest prognosis

• Promote, document and coordinate advanced planning for health care

COPD: Staging by FEVCOPD: Staging by FEV11COPD: Staging by FEVCOPD: Staging by FEV11

- Nishimura K, et al. Chest; 212:1434, 2002.

COPD: Staging by FEVCOPD: Staging by FEV11COPD: Staging by FEVCOPD: Staging by FEV11

- Nishimura K, et al. Chest; 212:1434, 2002.

- Celli, BR et al. N Engl J Med 2004;350:1005.

COPD BODE Survival IndexCOPD BODE Survival Index

Body Mass IndexAirflow ObstructionDyspneaExercise Capacity

COPDCOPDEmerging Profile of PatientsEmerging Profile of Patients

in the Last Year of Lifein the Last Year of Life

COPDCOPDEmerging Profile of PatientsEmerging Profile of Patients

in the Last Year of Lifein the Last Year of Life severely reduced FEV1

severely reduced and declining performance status

multiple recent exacerbations Prior ICU admissions co-morbidities low body weight depressed lives alone

COPDCOPDEmerging Profile of PatientsEmerging Profile of Patients

in the Last Year of Lifein the Last Year of Life

COPDCOPDEmerging Profile of PatientsEmerging Profile of Patients

in the Last Year of Lifein the Last Year of Life severely reduced FEV1

severely reduced and declining performance status

multiple recent hospitalizations Prior ICU admissions co-morbidities low body weight depressed lives alone

“Have you been thinking about how or when you might die?”

“Have you been thinking about how or when you might die?”

- Quill TE.JAMA; 284:2502 2000.

“Some people in your current condition live 1 or 2 years or longer.

But your lung reserve is so reduced now that you might die at any time from a complication of your disease.”

“Some people in your current condition live 1 or 2 years or longer.

But your lung reserve is so reduced now that you might die at any time from a complication of your disease.”

“Some people in your current condition live 1 or 2 years or longer.

But your lung reserve is so reduced now that you might die at any time from a complication of your disease.”

“Some people in your current condition live 1 or 2 years or longer.

But your lung reserve is so reduced now that you might die at any time from a complication of your disease.”

“Hope and expect for the

best.

Prepare for the worst.”

“Hope and expect for the

best.

Prepare for the worst.”

-Back AL et al.Ann Intern Med 138:439, 2003

Preparing aMedical Advance Directive

Preparing aMedical Advance Directive

• Based upon a structured discussion between patient, designated proxy and physician.

• A written Medical Advance Directive summarizes the discussion and is signed by all 3 participants.

• Based upon a structured discussion between patient, designated proxy and physician.

• A written Medical Advance Directive summarizes the discussion and is signed by all 3 participants.

Preparing aMedical Advance Directive

Preparing aMedical Advance Directive

• Based upon a structured discussion between patient, designated proxy and physician.

• A written Medical Advance Directive summarizes the discussion and is signed by all 3 participants.

• Based upon a structured discussion between patient, designated proxy and physician.

• A written Medical Advance Directive summarizes the discussion and is signed by all 3 participants.

Preparing aPreparing aMedicalMedical Advance Directive Advance Directive

Preparing aPreparing aMedicalMedical Advance Directive Advance Directive

• Preferences for initiating and continuinglife support.

• Dying at home or in a hospital.

• Preferred facilities for medical care.

• Plan for the “what ifs.”

• Preferences for initiating and continuinglife support.

• Dying at home or in a hospital.

• Preferred facilities for medical care.

• Plan for the “what ifs.”

Penn Hospice at Rittenhouse

Case #2A 58-year-old school teacher was found to have idiopathic pulmonary fibrosis. He declined consideration for lung transplantation.

Over 4 years, his disease progressed until he required high-flow supplemental oxygen.

Case #2The pulmonologist met with the man and his wife to discuss advanced medical planning.

The wife wrote a letter summarizing the conversation. All three participants signed the letter.

As symptoms progressed, treatment was initiated with sertraline and lorezepam for anxiety and depression and low-dose prednisone for cough.

Case #2Three months later, the man was hospitalized and emergently intubated for respiratory failure accompanied by air hunger at rest.

Three days later, in accordance with his medical advanced directive, he was extubated under palliative sedation with his wife at the bedside.

Palliative care aims to prevent and relieve suffering by early identification, assessment, and treatment of pain and other types of physical, psychological, emotional, and spiritual distress.

- World Health Organization

Palliative Care