This document discusses end-stage COPD and advanced lung disease. It defines advanced lung disease as chronic lung illnesses like emphysema and pulmonary fibrosis that greatly impair patients' ability to do normal activities. Patients with advanced lung disease experience significant distress from symptoms like shortness of breath. The document discusses how hospice services can help alleviate this distress by providing comprehensive symptom management, equipment, counseling and support for patients and their families. It also presents challenges around identifying when a patient's lung disease has reached an end-stage and discusses the advantages hospice can provide for COPD patients.

1. End Stage COPD Patients
Hari Nagaraj, MD
Board certified Internal Medicine
Pulmonary, Critical Care, Sleep Medicine
Hospice and Palliative Medicine
Medical Director, Vitas Sacramento, CA

2. Objectives
• Define and understand the types of advanced lung
disease (ALD)
• Describe the patient and caregiver distress
associated with advanced lung disease
• Discuss how hospice services can alleviate distress
for patients, caregivers and referral sources
• Present techniques on how to approach physicians
who care for patients with ALD
• Use patient profiles to help referring clinicians identify
patients who can benefit from hospice

3. First, some thoughts…
Talk about Advanced Lung Disease
• Not about end-stage lung disease
• No one thinks of themselves or their patients as
end-stage anything
• 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!

4. 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:
• Chronic Bronchitis
• Pulmonary fibrosis
• Emphysema
• Sarcoidosis
• Cystic fibrosis

5. Anatomy of normal lung

6. What is ALD? (Cont.)
• Affects large numbers of people seen in primary
care offices every day
– More common: Emphysema, Chronic
Bronchitis.
– Less common: Pulmonary fibrosis, sarcoidosis,
cystic fibrosis
• Progressive and not curable (except with a lung
transplant in some cases)
• People with advanced lung disease have great
difficulty carrying on normal activities

7. COPD is a preventable and treatable lung
disease characterized by persistent airflow
obstruction that is progressive, not fully
reversible and associated with a chronic
inflammatory response to noxious particles
Exacerbations and co-morbidities contribute
to overall severity.
Definition

8. Changing face of COPD

9. COPD burden
COPD number three killer disease-2011
16 million diagnosed and another 16 million undiagnosed in
the US
1.5 million ED visits, 5% of all physician office visits and 13%
hospitalizations
Leading cause of impaired quality of life and disability
Overall cost: $32 billion

10. Burden of COPD and other
ALD
In chronic patients:
• 51% report work negatively affected
• 70% experience difficulties with normal activity
• 56% cannot do household chores
• 53% reduce participation in usual social activities
• 50% have problems sleeping
• 46% have family activities affected
Virtually all hospice appropriate patients have most or
all of these factors affecting their lives!

11. Cost Of COPD
Care for the COPD patient is expensive
• $647 per ED visit
• $7242 per simple admission
• $41,370 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

12. Why COPD got
unrecognized?
Dyspnea remains unnoticed until distressing
Patients report their symptoms too late
Cough and phlegm attributed, consequences of
smoking and not early signs of COPD
Spirometry is underutilized in primary care
Terminology confusion
Smoking ill effects
COPD was thought of as a disease of old white
Americans

13. Changing Epidemiology of
COPDPrevalence in African Americans increased in
with a higher ER visits, hospitalizations, death
COPD patients in the age group 45-54 rose by
90% and accounts for 22% of all COPD
 COPD patients in the older than 75 rose by
140% accounting for 21% of all patients.
 Prevalence of COPD has risen markedly in
women, 6.7 million women and 3.8 million men
had COPD with a higher death rate in women

14. Symptoms of COPD
Shortness of breath, cough, phlegm
Limitation of activity- NYHA class 1-4
Reduced RV ejection fraction with Pulmonary
hypertension
Psychosocial effects including anxiety and depression
Cognitive deficits from chronic hypoxia

15. COPD- Multisystem
Disorder
Sleep disturbances, including insomnia, sleep
apnea (Overlap syndrome)
Many patients have skeletal muscle
dysfunction/wasting, unable to perform ADL
1/3 underweight & malnourished
COPD patients have increased risk of
osteoporosis and vertebral fractures.
BODE index severity score

16. Impact of Advanced
Pulmonary Disease
Hospital Readmission Reduction Program
• Reduction in all cause readmissions by aligning
payment with outcome
• Applied following admission for AMI, CHF and PNA to
patients who readmit within 30 days
• Now will include readmissions for exacerbations of
COPD
• Penalties to Medicare billing
– 2015: 3%
– And don’t forget sequestration and VBP!

17. COPD Readmission Causes
• Exacerbations not fully resolved at D/C
• Disjointed Rx across continuum of care
• Inadequate patient training
• Lack of professional post D/c follow up
• Inadequate equipment at home
• Lack of Exacerbation action plan
• Lack of Patient centered care
• End Stage Disease

18. Readmission reduction
• COPD guideline directed therapy for ED, hospitalized,
Outpatient and across transitions of care
• Patient caregiver education, Active lifestyle
• Smoking cessation, inhaler use technique
• Spirometry, O2 needs assessment
• Teach back patient training
• Pulmonary rehab, Proper equipment
• Action plan for exacerbation
• Post discharge phone call 48-72 hours
• Provider follow-up visit in 7-10 days
• GOALS OF CARE discussion

19. Definition of Hospice care
• A model of care that focuses on relieving symptoms and
supporting patients with a life expectancy of six months or less
• Interdisciplinary approach
• Emphasis is on comfort, not curing
• Provided in patients home, freestanding hospice facilities,
hospitals, nursing homes and other long-term care facilities

20. Role of palliative care in
COPD

21. Palliative Care & Hospice
Improve Clinical Outcomes
Patients with advanced lung disease and
their families experience:
• ↑ overall satisfaction
with their care
• ↑ symptom control,
QOL
Adler, ED. Palliative care in the treatment of advanced heart failure.
Circulation 2009 120(25): 2597-606.

22. Palliative Care & Hospice
Improve Clinical Outcomes
(Cont.)
• ↓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
Adler, ED. Palliative care in the treatment of advanced heart failure.
Circulation 2009 120(25): 2597-606.

23. Pulmonary EOL Care:
Challenges
• Difficult to predict prognosis
• Physicians not skilled at goal discussions
• Barriers to communication
• Patients develop “Lazarus” syndrome
• Dyspnea treatment difficulties
• Anxiety and Depression
• Social and spiritual issues
• Hospice staff poorly trained for COPD
• Hospital staff poorly trained for EOL

24. Pulmonary EOL Care: Facts
More ICU time, more ED visits
Less effective symptom management
Dyspnea, pain, anxiety, depression
Less advance directives
Less satisfaction with medical care
25% of last year spent in hospital despite
wishes to contrary
Less palliative care and hospice
utilization

25. What Do Patients Want
Control pain and symptoms
Physician dis-abandonment
Avoid inappropriate prolongation of the dying
process
Achieve a sense of control
Relieve burdens on family
Strengthen relationships with loved ones

26. COPD Patients Desire
Education
o Disease information
o Treatment options
o Prognosis
o What dying might be like
o Advance Care planning

27. Barriers to “diagnosing dying”
Hope that the patient may get better
Lure of unrealistic or futile interventions
Disagreement amongst clinicians
Failure to recognise key signs
Lack of knowledge about prescribing
Poor communication skills
Fear of hastening death
Concerns about resuscitation
Cultural/spiritual/medico-legal issues

28. Role of Palliative Care in
Preventing Readmission
• Hospital team
• Identify patients at risk
• Goal discussions
• Advance Care Plan
• Outpatient team
• Medication reconciliation
• Symptom management
• Early intervention for exacerbations

29. Dyspnea in EOL

30. Cost Effective Recommendations
• Utilize albuterol and ipratroprium
• Nebulized is inexpensive and better absorbed
• Nebulized LABA +/-
• Levalbuterol no additional benefit over albuterol
• DPI/ MDI of questionable benefit in GOLD 4
• Inhaled steroids for time limited trial
• Mucolytics, anti-tussives minimal benefit
• Teach breathing exercises
• Encourage exercise training
• Teach “action plan” for exacerbations

31. Dyspnea treatment

32. Identification of End stage
Pulmonary Disease
No single event or parameter signals end stage
Persistent dyspnea despite optimal medical treatment
Dyspnea impairing efforts to leave home
Increasing number of hospital admissions
Limited improvement after hospitalization
Increasing number of physician visits
Onset of fear, anxiety or panic attacks
Expression of concerns about dying
No reference to oxygen saturation or other parameter of
pulmonary function
It is difficult to accurately identify those with a
prognosis of six months or less

33. Hospice criteria for Lung Disease
Dyspnea at rest or minimal exertion or poorly
responsive to therapy
Progression of lung disease with frequent use of
medical services, inability to perform ADL,
unintentional weight loss or recurrent bouts of
bronchitis or pneumonia
FEV1 <30%, Po2<55, Pco2>50, sat<88%
Continuous o2, steroid dependence, cor
pulmonale, cyanosis

34. Advanced Lung Disease
End-Stage Pulmonary Disease
Progression of disease manifested by:
• Multiple hospitalizations, ER or office visits
• Dyspnea at rest or with minimal exertion
• Dyspnea poorly responsive to
bronchodilators
• FEV-1 < 30% predicted, post-
bronchodilator

35. Hospice Advantages for
COPD
Team visits to prevent exacerbations
Symptom management expertise
Team provides equipment, counsels pt & family
Advance Care planning
CNA provides personal care
Volunteer provides socialization
Hospice pays for some medication and
equipment
24/7 service and support
Support for caregiver/ family
Bereavement Support

36. Benefits of Hospice in
COPD
Improved symptom management
Psychosocial, spiritual support
Patients live average 29 days longer
Less financial stress
More time spent in desired location
Caregiver survival and quality of life
Patient and family satisfaction

37. How Hospice Services
Can Help (Cont.)
• DME and medications
– Oxygen and other DME are free for patient
– All medications for lung disease are free and
delivered to home
• 24/7 availability
– Nurses available all the time to provide
advice by phone or visits

38. How Hospice Services
Can Help (Cont.)
• Decrease caregiver distress
– Caregiver has extra assistance of hospice team
– Relieves feeling of being alone and responsible
• Decrease urgent calls to physician
– Patient and family to call us; we send nurse to visit and
assess; nurse calls physician as needed
– Prevents late afternoon crisis visits to office
– Early recognition and management of infections and
exacerbations

39. Hospice & Palliative-
Pulmonary program
• Elements of program:
• Education
• Advance Directive plan
• Clinical protocol- Dyspnea protocol
• Data collection

40. Pulmonary Emergency
protocols
Acute Shortness of Breath
• Start protocol
• Medications and non pharm treatments
• Call “on call” nurse
• No relief: Continue protocol
• Nurse assess: HF vs COPD?
• Lasix, nebs, steroids , morphine
• Call MD

41. COPD Emergency Kit
Albuterol
Morphine
Lorazepam
Dexamethasone (po/sq)
Furosemide
Haloperidol
Atropine (secretion control)

42. Case 1: Grace J
• 72-yr-old woman with advanced COPD, visiting
her family physician today. Uses continuous O2
and uses her inhalers and other medicines as
prescribed
• Two ED visits in last five months for dyspnea
• Hospitalization four months ago for pneumonia

43. Case 1: Grace J (Cont.)
• Grace feels good today
– She used her motorized scooter to get into
the office
– She can take three steps before becoming
short of breath
– Dr. Morrison examines her in a chair so
that she doesn’t have to climb onto the
exam table
• Is she eligible for hospice services?

44. Case 1: Grace J (Cont.)
Barriers to hospice services:
• Dr. Morrison: “Hospice? You’re kidding me.
She’s not dying. I have 20 patients just like her!”
• Grace: “Oh. I’m not sure about hospice. I go to
Dr. Morrison's office or the ED when I am really
short of breath.”

45. Case 2: Mick G
• 64-yr-old man hospitalized with pneumonia.
He is on day five of a 10-day course of
intravenous antibiotics
• Has advanced pulmonary fibrosis and is not
a candidate for lung transplantation
• He requires continuous O2 at home and was
short of breath at rest, even before
developing pneumonia

46. Case 2: Mick G (Cont.)
Barriers:
• He is referred for hospice services after
completion of antibiotic course
• Patient and his wife are hesitant to enroll
in hospice because they don’t want to
“give up antibiotics when he develops
pneumonia”

47. Case 3: Stevie B
• 98-yr-old woman with asthma has a routine visit to
her geriatrician with her daughter
• She uses two different inhaled medications every
day. She uses O2 when she sleeps at night, but
feels fine without it during the day. She sleeps
upstairs in a two story home. She walks up stairs
without getting short of breath
• About 2x/mo, she has an asthma flare-up which
she treats with nebulized medicine

48. Case 3: Stevie B (Cont.)
• Stevie was hospitalized a few months ago to
have her gallbladder removed
• Her geriatrician refers her for hospice services
• Barriers?
• How would you respond to these concerns?

49. Summary
• There are many patients with ALD who can
benefit from hospice services
• Physicians and other clinicians do not
recognize which patients with ALD can benefit
from hospice services
• By painting a picture of eligible patients, we
can improve quality of life for patients, their
families and the referring clinicians