Define and understand the types of advanced lung disease (ALD) Discuss the impact of ALD on patients, family, and the health system Describe the symptom burden of ALD Appreciate factors associated with a poorer prognosis in ALD Identify guidelines for referral to Hospice Review the medical management of ALD

1. End Stage Pulmonary Disease

2. VITAS Healthcare programs are provided CE credits for their Nurses/Social Workers and Nursing Home Administrators through: VITAS
Healthcare Corporation of Florida, Inc./CE Broker Number: 50-2135. Approved By: Florida Board of Nursing/Florida Board of Nursing
Home Administrators/Florida Board of Clinical Social Workers, Marriage and Family Therapy & Mental Health Counseling.
VITAS Healthcare programs in Illinois are provided CE credit for their Nursing Home Administrators and Respiratory Therapists through:
VITAS Healthcare Corporation of Illinois, Inc./8525 West 183 Street, Tinley Park, IL 60487/NHA CE Provider Number: 139000207/RT CE
Provider Number: 195000028/Approved By the Illinois Division of Profession Regulation for: Licensed Nursing Home Administrators and
Illinois Respiratory Care Practitioner.
VITAS Healthcare programs in California/Connecticut/Delaware/Illinois/Northern Virginia/Ohio/Pennsylvania/Washington
DC/Wisconsin are provided CE credit for their Social Workers through VITAS Healthcare Corporation, provider #1222, is approved as a
provider for social work continuing education by the Association of Social Work Boards (ASWB) www.aswb.org, through the Approved
Continuing Education (ACE) program. VITAS Healthcare maintains responsibility for the program. ASWB Approval Period: (06/06/15 -
06/06/18). Social Workers participating in these courses will receive 1-2 clinical or social work ethics continuing education clock hour(s).
{Counselors/MFT/IMFT are not eligible in Ohio}
VITAS Healthcare Corporation of California, 310 Commerce, Suite 200, Irvine, CA 92602. Provider approved by the California Board of
Registered Nursing, Provider Number 10517, expiring 01/31/2019.
Exceptions to the above are as follows: AL: No NHAs, DE: No NHAs, DC: No NHAs, GA: No NHAs, KS: No NHAs, NJ: No NHAs, OH:
No NHAs, PA: No NHAs, TX: No NHAs, VA: No NHAs, WI: No NHAs and Nurses are not required – RT only receive CE Credit in Illinois
06-2017
CE Provider Information

3. Goal
The goal of this presentation is to educate staff about end stage pulmonary disease.

4. Objectives
• Define and understand the types of advanced lung disease (ALD)
• Discuss the impact of ALD on patients, family, and the health system
• Describe the symptom burden of ALD
• Appreciate factors associated with a poorer prognosis in ALD
• Identify guidelines for referral to Hospice
• Review the medical management of ALD

5. Case Study
78 year old who was referred to VITAS following a third hospitalization in the past three
months for exacerbation of Chronic Obstructive Pulmonary Disease (COPD). He was
diagnosed with COPD 2 years ago, has a 60 year smoking history, and also has
emphysema, HTN, NIDDM diet controlled, and PVD. He has been treated with Advair
and Spiriva for a number of years. In the past six months there has been a significant
clinical decline. During each hospitalization, the COPD exacerbation was treated with IV
antibiotics, pulse steroids, and nebulized albuterol and ipratropium.

6. First, Some Thoughts…
Talk about Advanced Lung Disease
• Not about end-stage lung disease
• People are OK thinking of themselves or their patients as having an advanced illness
• The physicians and patients think of disease as a chronic illness not as a progressive
terminal illness

7. And Some More Thoughts…
“Hospice is a package of services”
• It is effective to think of hospice this way and to describe hospice to others in this way
‒ People are NOT “on hospice”
‒ Rather they are “receiving hospice services” or “benefiting from hospice services”

8. Case Study (Cont.)
Another exacerbation of COPD occurred with a hospital readmission for three days
followed by a SNF stay. Continuous oxygen at 2L was initiated, but with continued SOB
at rest and with any exertion. He is unable to bathe or dress himself due to dyspnea.
He can ambulate four to five steps before resting to catch his breath. He spends most of
the day in bed or a recliner, dozes throughout the day, and no longer leaves his home or
the first floor of his house.

9. Types of Advanced Lung Disease
• Obstructive Lung Disorders: Air cannot get out
‒ COPD, Asthma, Emphysema
• Restrictive Lung Disease: Air cannot get in
‒ Interstitial Lung Disorders:
• Sarcoid, idiopathic pulmonary fibrosis, interstitial pneumonia, drug-induced, radiation-induced, and many more
‒ Neuromuscular Disorders
• ALS, myasthenia gravis
‒ Thoracic/Extrathoracic:
• Obesity, ascites, kyphoscoliosis

10. What is Advanced Lung Disease? (ALD)
Many people suffer from shortness of breath and other disabling symptoms due
to advanced, chronic lung illnesses such as:
• Asthma
• Chronic Obstructive Pulmonary Disease (COPD)
• Pulmonary fibrosis
• Sarcoidosis
• Cystic fibrosis
• Neuromuscular disorders

11. What is ALD? (Cont.)
• Affects large numbers of people seen in primary care offices every day
‒ More common: Asthma and COPD, chronic bronchitis, emphysema
‒ Less common: Pulmonary fibrosis, sarcoidosis, cystic fibrosis
• Progressive and not curable (except with a lung transplant in rare cases)
• People with advanced lung disease have great difficulty carrying on activities of daily
living

12. Some ALD Statistics
• 15.7 million adults have COPD
• About 140,000 have pulmonary fibrosis
• About 30,000 have ALS
• Lower respiratory diseases are the 3rd
leading cause of death in the US
• Only 8.2 % of hospice admissions in 2012 were due to ALD

13. COPD Definition
• COPD is a chronic progressive illness characterized by not fully reversible airflow
limitation
• Associated with abnormal inflammatory response to particles and gasses
• Predominant cause is cigarette smoking other causes include:
– Occupational exposure
– Indoor/outdoor pollutants/irritants

14. Other COPD causes
Other causes of chronic airflow obstruction include:
•Emphysema
•Chronic bronchitis
•Even asthma in some cases

15. Genes
Infections
Socio-economic
status
Aging Populations
© 2013 Global Initiative for Chronic Obstructive Lung Disease
Global Strategy for Diagnosis, Management and
Prevention of COPD Risk Factors for COPD

16. COPD Epidemiology
• 15.7 Million Americans have been diagnosed with COPD
• More than 50% of adults with decreased pulmonary function are not aware that they
have COPD
• COPD is the third leading cause of death in United States
• From 2009 - 2014 Death Rates have declined for men and are unchanged for women
• Deaths from end-stage COPD higher in women than men
– Result of physical (lung size) and hormonal (estrogen) differences between men and women

17. COPD Prevalence in Adults by State, 2015

18. Age Standardization Death Rates for COPD, 1999 to
2014

19. Age Standardized Death Rate (Per 100,000 US
Population) For COPD by States 2014

20. Who Has COPD?
• Mainly Adults 65 - 74 and greater than 75
– Patient’s living longer with chronic disease
• Current or former smokers
• Asthma history
• Social factors:
– Unemployed, retired, unable to work, divorced, widowed, separated, and non-high school graduates
– Women, American Indian, and multiracial non-Hispanics

21. Case Study (Cont.)
Advair and Spiriva continued without much effect and the patient receives some benefit
from his nebulizer which he uses a “few” times a day. Height six foot tall and weight
118lbs with a 20lbs weight loss since all this began and appetite remains poor. The
patient is admitted to hospice on discharge from the Hospital. The admissions nurse
coordinates delivery of the patient’s medications, DME, and oxygen to the home.

22. ALD Clinical Presentation
Symptoms
• Dyspnea: 78% with activity, 24% on conversation
• Cough, wheezing, and chest tightness
• Fatigue and weakness
• Anorexia
• Edema
• Excessive respiratory mucous production
• Depression
• Anxiety
• Sleep disturbance (often under recognized)

23. Table 1
Variability of COPD symptom prevalence in different studies
a
Morning symptoms were defined as those symptoms present on walking, rather than persisting through the morning
b
Defined as symptoms that were worse than usual
COPD chronic obstruction pulmonary disease, n.r. not reported
Symptom Variability
Study Patients Symptoms
Prevalence Percentage
Morning Daytime Nighttime
Miravitles et al. COPD 2016 [27] n = 727 Any Symptoms 81.4 82.7 63.0
Stephenson et al. Int j Chron Obstruct
Pulmon Dis. 2015 [27]
n = 1239 Any Symptoms 78.6 n.r. 65.9
Bateman et al. Respir Res. 2015 [29] n = 3394 Any Symptoms 94.4 n.r. 88.3
Roche et al. COPD 2013 [18] n = 1489 Any Symptoms 39.8a
97 58
Partridge et al. Curr Med Res Opin. 2009
[17]
n = 803 Worse symptomsb
37 34 25

24. Symptom Variability in ALD

25. ALD Symptom Impact on Quality of Life (QOL)
• A Survey of 1,100 COPD patient’s identified the following symptoms as having the
greatest impact on the patients perceived well-being:
– Increased coughing 42%
– Shortness of breath 37%
– Fatigue 37%
– Increased sputum production 35%

26. ALD Clinical Presentation
• Rapid respirations
• Prolonged expirations and purse lip breathing
• Muscle wasting
• Increased anterior-posterior chest diameter
• Use of accessory muscles of respiration
• Wheezes and/or rhonchi

27. Pharmacologic Therapy
• No medications to date can modify COPD’s long terminal decline
• Treatment regimen - patient specific
• It is based upon air flow limitations, frequency, and severity of symptom exacerbations

28. Bronchodilators
• Relaxing smooth muscles in the bronchus improves expiratory flow and emptying of
the lungs  improve air exchange
• No effect at the alveolar level
• Improved O2
or decreased retained CO2
is a passive consequence of bronchodilation
• Medications are given on either PRN or routine basis to prevent or reduce symptoms
• Various Forms Available

29. Bronchodilator Drug Classes
• Beta 2-
agonist (short and long acting)
• Anticholinergics (short and long acting)
• Combination of short acting Beta 2-
agonist + Anticholinergics
• Combination long acting Beta 2-
agonist + corticosteroids
• Methylxanthines

30. • Albuterol: (Ventolin, Proventil) fast acting effects
• Inhaler four to six hours or Nebulizer four to six hours
• Nebulizer therapy for severe disease, exacerbations, elderly, and dementia co-
morbidity
• Oral Preparations are not recommended
– Not Absorbed Well and Many Adverse effects
Short Acting Beta Agonists

31. • Albuterol aerosol HFA: cost ineffective + no added benefit
• Levalabuterol (Xopenex): Not recommended
– No added benefit
– Not effective requires 2x the dose to obtain same effect as albuteral
– Does not decrease cardiac arrhythmias or prevent tremors, and may lack effectiveness
• Others: Pirbuterol (Maxair)
Short Acting Beta Agonists: Not Recommended

32. • Salmeterol (Serevent Diskus) one inhalation every 12 hours
• This has a slow onset of action and is not for acute rescue dosing
• Others: Arfomterol (Brovana), Formoterol (Foradil and Perforomist), and Inducterol
(Arcapta)
• Utility in Hospice patients has not been studied, but any benefit is likely limited due to
requirements to hold breath after dosing
Long Acting Beta Agonists

33. • Short acting: Ipratropium (Atrovent) - inhaler three to four times a day; nebulizer four
to six hours
– Aerosol form cost ineffective - no added benefit
• Long acting: Tiotropium (Spiriva) - inhaled every 24 hours via inhaler or inhalation
device
– In large studies no added benefit found when added to standard therapy
– These delivery systems have limited use in end stage disease due to patients poor inspiratory effort,
requirement to hold breath, and functional decline
Anticholinergics

34. • Tiotropium: Modest improvement in lung function, fewer hospitalizations, and
therefore improved quality of life for stable COPD
– Tiotropium costs more than 10X Ipratropium
• Other product in class: Aclidinium (Tudzova and Pressair)
• No data to guide treatment in hospice eligible patients
Ipratropium Versus Tiotropium

35. • Albuterol + Ipratropium nebulizer (DuoNeb):
– One unit dose every four to six hours
– Preferred substitute in hospice eligible patients
• Albuterol + Ipratropium inhalation spray (Combivent Respimat):
– One inhalation four times a day
Combination of Short Acting Beta 2-Agonist +
Anticholinergics

36. • Salmeterol + Fluticasone (Advair Diskus)
– Inhaled every 12 hours
– Lung function so compromised they cannot inhale the med properly (can lead to thrush due to
fluticasone)
• Requires holding breath for 10 seconds
– Dementia and severe COPD limit ability to deliver medication
• Other product: Budesonide/Formoterol (Symbicort)
Combination Long Acting Beta 2-Agonist +
Corticosteroids

37. Anti-Inflammatory Agents
Corticosteroids:
•Routine usage improves symptoms, lung function and quality of life
•Does not modify decline or mortality and has significant side effects
•Discontinuation may evoke symptom exacerbations
•For end stage disease and hospice benefits of oral systemic therapy often out way risks

38. • If patient able to effectively take medication
• These are not additive:
– Inhaled Corticosteroid: Unclear Effect
– LABA: 15 - 20%
– LABA+Inhaled Steriod: 25%
– Tiotropium: 14 - 25%
– Phosphodiesterase four inhibitors: 17% reduction for Roflumilast
– Azithromycin: 25% but increased risk of cardiac death
– Fluticasone/Salmeterol vs. Tiotropium: no difference
Percentage of Exacerbation Prevention

39. • Fluticasone/Salmeterol (Advair)+ Tiotropium (Spiriva):
• 50% reduction with combination of three medications
• There was no combined reduction in exacerbation rates when compared to use of
each product individually
• These Medications Often are not appropriate for hospice patients when:
– Lung function so compromised they cannot inhale the med properly
– Patient not able to inhale and hold breath for 10 seconds
– Patients have other co morbidities that make administration difficult e.g. dementia
Hospitalization Prevention the Challenge in the
Literature

40. • All advanced therapies are approved on a case by case basis and would require
discussion with Medical Director and PCA
• BiPAP and other forms of mechanical ventilation
– Often used as bridging therapy
• Primary pulmonary hypertension medications
– Prostacyclin Agonists: Epoprostenol, Trepostenol
– Endothelin Agonists: Ambisetron, Bosentan
– Nitric Oxide enhancers: Sildenafil, Tadalafil
Advanced Therapies

41. • 24 hours after admission to hospice the patient wakes up in severe respiratory distress
– He is short of breath and wheezing
– 911 is called and the patient transported to the Emergency Department (ED)
• A relative sees the ambulance next door and calls Telecare
– The family and Hospice nurse meet the patient at the ED
• The patient is receiving BiPap and nebulized bronchodilator therapy and two hours
later is improved so that BiPaP is discontinued
• Transferred home on ICC for dyspnea and exacerbation
Case Study (Cont.)

42. • The mild exacerbation patient:
– More difficult to prognosticate, subtle functional declines, and prognosis closer to 6M or perhaps greater
– Persistent symptoms with little activity or at rest
– Can transition to moderate or severe exacerbation
• The moderate exacerbation patient:
– Clearly unstable, exacerbates easily, persistent symptoms
• Acute severe exacerbation:
– Unstable and may be actively dying
Typical Hospice Presentations of COPD

43. • Has unstable disease with Hx of recent exacerbation or multiple exacerbations
• Dyspneic with minimal exertion and/or conversation
• Patient may be able to ambulate on single level of home and leave home with
caregiver assistance
• Patient may or may not be limited in self-care but often will require increased time and
rest to complete
• May present with weight loss and cachexia
The Mild Exacerbation Hospice COPD Patient

44. • Patient has unstable disease
• Symptoms are continuous
– Dyspneic with a few words
• Patient often requires continuous O2
and does not respond well to bronchodilators
• Patient confined to bed and chair or single room
• Essentially completely dependent in most ADL’s
– Prolonged feeding time common due to fatigue
• Often thin with pulmonary cachexia
The Moderate Exacerbation Hospice Patient

45. • Energy conserving techniques and limiting exposure to sick contacts
• All nebulizer therapy for inhaled medications
• Oral steroids as tolerated
• Low dose continuous and PRN opiates for dyspnea
• Low dose BDZ if patient has worsening anxiety
– Caution may potentiate opiate sedating effects
Treatment of the Moderate Exacerbation Hospice
Patient

46. • Patient is presenting with severe and acute distress
• Usually requires higher LOC: IPU, GIP, or ICC
• Oral medications may not be an option
• Patient may likely require SQ or IV opiates for acute symptom relief
• Inciting event usually precedes exacerbation:
– Pneumonia, bronchitis, pneumothorax, heart failure, cardiac tapenade
Acute Severe Exacerbation

47. • Prior history exacerbations and particularly the need for hospitalization
• Previous mechanical ventilation
• Significant comorbidities
• Significant new symptoms and treatment plan changes
Acute Exacerbations are Likely When

48. Treatment options:
• Evaluate for Inpatient or CC status given severity and response to acute management
• Home treatment as effective as hospitalization when no change in mentation
Pharmacology:
• Nebulized Short acting bronchodilators
• Corticosteroids
• Antibiotics
Acute Exacerbations

49. • Morphine IV or SQ - immediate onset
• To "break" acute dyspnea 2 - 5mg Q5 - 10 for one to two doses before transitioning to
a scheduled Q4 hour opiate (or LA formulation) and Q1 hour prn
• Similar methodology can be used with oral medications if needed but at a dose of 5
-10mg Q15
• Nebulized opioids including morphine has insufficient supporting data and thus is not
recommended
– Not Cost Effective
Dyspnea Management

50. • Hospice appropriate COPD patients have advanced disease
• Having more frequent COPD exacerbations
• Often dyspneic and tachypneic
• Are often O2
dependent, steroid dependent, and poorly responsive to bronchodilators
• Often do not have inspiratory velocity to effectively use dry powder inhalers and MDI’s
• Present to hospice following functional decline, cachexia, and/or severe disease
exacerbation
The Hospice COPD Patient

51. • Present like patients in a persistent exacerbation
• Breathlessness is the hallmark symptom of COPD
– cough, sputum production, wheeze, and chest tightness
• increasing evidence base demonstrating that the overall symptomatic burden has a
detrimental impact on:
– Health status, quality of life, and daily activities, increased anxiety and depression levels, increased risk
of exacerbations, and a worse disease prognosis
The Hospice COPD Patient (Cont.)

52. Disabling dyspnea as demonstrated by:
• Dyspnea at rest or with minimal exertion
• Dyspnea poorly responsive to bronchodilators
– FEV-1 < 30% predicted, post-bronchodilator
Progressive pulmonary disease as manifested by:
• Multiple hospitalizations, ER visits or doctor’s office visits
• Cor pulmonale
End-Stage Pulmonary Disease

53. Other indicators of a poor prognosis:
• Body weight
– < 90% ideal body weight or
– > 10% weight loss
• Resting tachycardia > 100/min
• Abnormal ABGs or O2
saturation
– pO2 < 55 mm Hg
– O2 saturation < 88%
– pCO2 > 50 mm Hg
• Continuous oxygen therapy
End-Stage Pulmonary Disease (Cont.)

54. • Gait speed decline
• PaCO2
increases, PaO2
decline
• Disability chair, recliner, or bed owing to COPD
• Maximal inspiratory pressure decrease
• Maximum work decline
• Depression and/or isolation
• Weight loss
Other Factors to Consider

55. • Prognosis is quite variable
• Hospice guidelines are accurate at 6M prognosis about 50% of the time
• It is important to look at disease status, symptoms, functional, and nutritional decline to
support
• Bode index may be supportive of limited prognosis and disease severity
ALD/COPD Prognosis

56. • Is a point system used to gage criteria for mortality using a 0 - 10 scoring system, with
higher numbers indicating a worse prognosis
– Body mass index
– Obstruction airflow
– Dyspnea
– Exercise capacity
• In this grading system: seven to ten has a 5% chance of death in one year and 80% in
52 months
• FYI--NHPCO guidelines has a 50% likelihood of death at six months
Bode Index for Predicating Mortality

57. • Functional decline for example, home bound, room confined, bed bound, limited ADL
• Respiratory function decline is progressive despite aggressive medical management
• Depression
• Weight loss
• Isolation
• All associated with a limited prognosis
Prognosis: Important factors

58. Case Study (Cont.)
On ICC wheezing continued with moderately short of breath. The Hospice physician
evaluates the patient the next day and prescribes oral steroids and IV antibiotics are
started. There was discussion of the use of his dry powder inhalers and their
effectiveness, and these were discontinued. The patient and family are agreeable to
scheduled nebulizer therapy, and the addition of a long acting opioid to manage his
symptoms. The use of telecare is reinforced with patient and family. He spend two days
on ICC and is returned to routine level of care.

59. Patient’s with Advanced Illness Prefer:
•Pain and symptom control
•Avoid inappropriate prolongation of the dying process
•Achieve a sense of control
•Relieve burdens on family
•Strengthen relationships with loved ones
Why is this Important?

60. • COPD is the third leading cause of death in America
• 51% Chronic patients have work affected
• 70% chronic patients have normal activity affected
• 56% chronic patients cannot do household chores
• 53% chronic patients have social activities affected
• 50% chronic patients have sleeping affected
• 46% chronic patients have family activities affected
• Virtually all hospice appropriate patients have most or all of these factors affecting their
lives
Burden of COPD and Other ALD

61. • Care for the COPD patient is expensive
– $647 Per ED Visit
– $7242 Per simple Admission
– $41370 Per complex admission with intubation 5.8% of admissions
• 30 day readmit rates by admission
– 17.8% ED visit
– 15.3% Simple admissions
– 17.8% Complex admissions
Cost of COPD

62. Hospital readmission reduction program
•Reduction in all cause readmissions by aligning payment with outcome
•Applied following admission for COPD, PNA AMI, CHF, and total hip or knee
replacement to patients who readmit within 30 days
•Penalties to Medicare billing
•2015: up to 3%
COPD and Readmissions

63. • 2010 COPD cost our system 49.9 billion dollars in direct and indirect healthcare costs
– 29.5 billion dollars direct healthcare expenditures
– 8 billion dollars in indirect morbidity costs
– 12.4 billion in indirect mortality costs
– Again most of these patients are over 65 year old and living with many other chronic illnesses like DM,
cardiac disease, and dementia
• They have high overall healthcare utilization especially at the end of their lives and most occurring in the last
month of life
Financial Cost and Cost to Healthcare system

64. • Patients with advanced lung disease and their families experience:
– ↑ overall satisfaction with their care
– ↑ symptom control, QOL
– ↓unnecessary, invasive procedures, and interventions near EOL
• ↑ Chance of dying at home
– Improved communication with health care providers
– Earlier referral to hospice may actually prolong survival (average 81 days for some California patients)
Palliative Care and Hospice Improve Clinical Outcomes

65. Two months later the patient again becomes acutely short of breath and wheezing. He
has developed Ascites and lower extremity edema indicating the development of right
heart failure. His wife called Telecare and ICC is initiated.
He continues to remain SOB and wheezing despite nebulizer therapy, as needed
opioids, and diuretics for his edema after two days.
Case Study (Cont.)

66. His symptoms continue to worsen and the decision was made to transfer to the VIPU.
He was transferred to the IPU and IV therapies were initiated. After three hours of
intensive symptom management, he became comfortable and was no longer responsive
and died peacefully a few hours later with his family at bedside.
The family receives standard bereavement therapy for 13 Months.
Case Study Concludes

67. • Hospice alleviates symptom burden and improves quality of life for patients suffering
from ALD
• Hospice helps to maximize patients time in home and increases their chances of dying
in their home
• Hospice can support the healthcare system by improving:
– Readmissions
– High acuity healthcare utilization
Conclusion

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References (Cont.)

70. End Stage Pulmonary Disease