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End stage COPD - Meeting Patients' Challenges
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
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
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
COPDPrevalence 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
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
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
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
Hinweis der Redaktion
Slide three attempts to identify factors associated with end stage pulmonary disease and a prognosis of less than six months. As you can see there is no single clinical event or laboratory study that can be held as a reliable indicator of a prognosis of less than six months. In particular, oxygen saturations and pulmonary function studies cannot be used as a lone indication of the six months or less prognosis.