Palliative Care for Patients with

COPD

Huong Q. Nguyen, PhD, RN

Assistant Professor
University of Washington
School of Nursing

HCMC University Hospital, VN

12/11/07

Adapted from a talk by Lynn Reinke, ARNP, PhD (c)

Road Map

EOL Symptom
Management

EOL Care Outcomes of

Communications Palliative Care

Palliative Care
Definition & Scope
WHO Definition of Palliative Care

“…patient and family-centered care that

optimizes quality of life by anticipating,
preventing, and treating suffering.
Palliative care throughout the continuum
of illness involves addressing physical,
intellectual, emotional, social and
spiritual needs and to facilitate patient
autonomy, access to information and
choice.”

World Health Organization, 2005; www.capc.org (additional resource)

Palliative and EOL Care

Curtis (2007) Eur Resp J, early pub

 Shift in Palliative and EOL Care

Murray, S. A et al. BMJ 2005;330:1007-1011

Domains of Quality EOL:

• Pain and Symptom Management

• Whole Person Concerns / Affirmation
• Preparation for Death
• Autonomy and Sense of Control
• Family Burden and Well-Being
• Spiritual Beliefs / Completion
• Avoiding Prolongation / Decision-Making
• Relationships / Contributing to Others

American Geriatrics Society, IOM, Patrick et al, Emanuel and Emanuel,

Singer et. al, Steinhauser et.al. Hansen et al, U.S. National Consensus
Project for Quality Palliative Care 2004
Palliative Care: Interdisciplinary
Team

(From Ajemain I. The interdisciplinary team. In: Doyle K, Hanks G,

MacDonald N, editors. Oxford Textbook of Palliative Medicine, 1stEd; Oxford
Road Map

EOL Symptom
Management

EOL Care Outcomes of

Communications Palliative Care

Palliative Care
Definition & Scope
Prognostication with COPD is Difficult

100
90
80
70
Function

60
CANCER
50
40 COPD
30
20
10
0

death

“Is this patient sick enough that you would not

be surprised if he/she were to die within the next year.”
(slide adapted from Joanne Lynn, MD Rand Corp.); Goodlin SJ, Jette AM, Lynn J,
Wasson JH. Journal of Palliative Care 1998; 14 (1):30-5.
Prognostication—Some helpful
factors
• BODE Index (body mass index,
FEV1<30% pred., MRC dyspnea scale, 6
MWD test)
• Declines in physical function & ADL
• Comorbid illness (depression, CHF)
• Hospitalizations within the past year
• Characteristics (weight loss, marital
status, older age)
Celli BR, Cote CG, Marin JM et al. BODE Index in COPD. NEJM 2004; 350:1005-12
Pfeifer MP, Mitchell CK, Chamberlain L. Arch Intern Med 2003;163(5):609-12
Abrahm J, Hansen-Flaschen J. Chest 2002; 212:120
Coventry PA, et al. Age and Ageing 2005: 34:218-227
Almagro, Chest 2002; 121:1441
Triggers for Discussion of EOL
Preferences
• FEV1 <30% predicted
• Oxygen dependence
• 1+ hospital admissions in the past
year for an acute exacerbation of COPD
• Left heart failure or other co-
morbidities
• Weight loss or cachexia
• Decreased functional status
• Increasing dependence on others
• Age > 70
Curtis (2007) Eur Resp J, early pub
Example from the US:

Medicare coverage for hospice care:

• Disabling dyspnea at rest, poorly or

unresponsive to bronchodilators
• Progression ( ER & hospital visits for AECOPD
and/or respiratory failure w/serial  FEV1)
• Hypoxemia at rest on room air (PaO2 <55mmHg
or Sat 88%) or hypercapnia (pCO2  50 within
the last 3 months)
• Cor pulmonale (right heart failure)
• Unintentional progressive weight loss (> 10% in
< 6 months)
• Resting tachycardia (>100 beats/min)

National Hospice Organization. Hosp J 1996; 11(2):47-63

 Patients desire discussions
around:

1. Their diagnosis and disease process

2. The role of the treatments in improving
symptoms, quality of life, and duration of
life.
3. Their prognosis for survival and for
quality of life
4. What dying might be like
5. Advance care planning for future
medical care and exacerbations

rtis et al (2002) Chest;122:356-62; Hansen-Flaschen, J. Resp. Care, 2004, 49, 90-

 Communicating prognosis/EOL care
issues
• Broach subject of prognosis honestly
and compassionately
• Patient-family-health provider(s)
• “Ask-Tell-Ask” approach
– Seek permission to discuss prognosis
– Tell-inform using basic, language
• Guide further discussion by taking leads
from pts questions or comments.
– Ask to ensure adequate comprehension
• “ I want to make sure that you understand.
How would you explain your prognosis to
someone else?”

Hansen-Flaschen, J. Resp. Care, 2004, 49, 90-98; Back et al (2005) 55(3): 164-77
Communicating prognosis/EOL care
issues
• “We are not very good at predicting death
from COPD. It is possible that you will live
for another 1 or 2 years, or even longer. If
your condition turns for the worse, you
could die much sooner.”
• Numeric expression of risk preferred
– “this drug is very likely to cause side effects”
vs.
– “8 out of 10 people will have side effects from
this drug”
• Prognosis is based on groups at risk
– “Out of a group of 100 patients like your
mother, I would expect about 10 to survive
this”

Hansen-Flaschen, J. Resp. Care, 2004, 49, 90-98; Curtis (2007) Eur Res J.
Barriers to EOL communications

–Two barriers endorsed by 50% of

patient

• “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”

Knauft (2005) Chest 127:2188-96

 Barrier to EOL Communication #1

• “I’d rather concentrate on staying

alive than talk about death”
– Although prefer to not talk about death
and dying—strong opinions about CPR
and mechanical ventilation
– Important to have discussions even
patients do not want since  burden of
decision making on family members
– Discussion does not  provider’s focus
on finding therapies
– “Hope for the best but prepare for the
worst”
auft (2005) Chest 127:2188-96; Back, A.. et al, Ann Intern Med. 2003; 138, 439-4
Sidebar: Addressing
Spirituality
• Sensitive topic, a spiritual history can lead to
discussing treatment options and EOL care issues

• Set the context – ask permission to discuss issues

important to the patient
– “I would like to hear your perspective on how
things are going”
– “How do you see your situation?”
– “This is a tough situation, how do you deal with
it?”

• Seek for open cues (symbolism)

• Consult Chaplin service/clergy if appropriate

Sidebar: Spirituality
• HOPE Assessment Tool:
H – sources of HOPE, purpose of life rather
than focus on religion.
O – role/importance of ORGANIZED religion
P – PERSONAL spirituality and religious
PRACTICES
E – EFFECTS of pts spiritual/religious
beliefs on medical care/EOL issues. Helps
to re-direct discussion back to clinical
issues and decision making.
Anandarajah, G. & Hight E. American Fam. Physician, 2001, 63, 81-88.
Barrier to EOL Communication #2

“I’m not sure which physician will

be taking care of me if I get very
sick”
– Fear of abandonment at EOL
– Discussions of continuity of care
important
– Concerns are common across other
diseases, e.g. cancer, HIV/AIDS

Knauft (2005) Chest 127:2188-96

Barriers to EOL communications

–Provider barriers
• “There is too little time during our
appointments to discuss everything
we should.”
• “I worry that discussing end-of-life
care will take away his/her hope.”
• “The patient is not ready to talk about
the care s/he wants if s/he gets sick.”
–Interventions need to target both
patients and providers
Knauft (2005) Chest 127:2188-96
 Depression & Anxiety: Potential
Barriers
• Psychiatric morbidity is high in COPD
– Depression (37-71%)
– Anxiety (51-75%)
  disease severity (FEV1% <50%)--- 2.5
times risk of depression
• Often under-diagnosed & under-
treated
– Overlapping s/sx; perceive as normal for
COPD; lack of routine screening
• Depression associated with 3.6 odds
of dying 12 months after AECOPD (Ng,
2007)
ano, J Pain Symptom Manage, 2006, 31:58; van Manen (2002) Thorax 57(5): 412
Depression & Anxiety on EOL care

• May modify EOL treatment preferences

  depression—strong preference against
CPR
  depression—rate quality of EOL
communication as poor
• Important to treat depression before
EOL care discussions
– Improves understanding of decision impacts
– Likely to change preferences after
depression resolves
Nortriptyline: Improves Depression

(n=36 Severe COPD Patients)

30

25 Entry
12 weeks
Hamilton-D

20

15

10

0
NT Placebo

NT vs Placebo p=0.01
Borson, Psychosomatics 1992
Health Status and EOL

• Health status measured by St.

George’s Respiratory Questionnaire
was not associated with EOL
treatment preferences
• Cannot assume that worse health
status =/ higher likelihood of refusing
life-sustaining treatment
• Providers tend to under-estimate
patients’ QOL, important to not
impose values & assumptions on
patients & family
Stapleton (2005) Chest, 127(1):328-34
Advance Directive

Advance directive + Good communication about

EOL
=  Quality of EOL care

• Important especially due to unpredictable but

progressive, terminal disease
• Mechanical ventilation, CPR, tube feeding etc…
– Previous experiences by patient is good starting point
– What health state is worse than death?
  Stress &  care quality among family
members of dying patients
Sample Advance Directive
Road Map

EOL Symptom
Management

EOL Care Outcomes of

Communications Palliative Care

Palliative Care
Definition & Scope
Palliative Care: Impact on
Outcomes
• Aim: Test palliative care consultation
(advance care planning, psychosocial
support & family caregiver training—
multiple sessions) vs. usual care in COPD,
CHF, CA patients
• Improved dyspnea, anxiety and spiritual
well-being (p<.05, all)
• No differences in depression, pain, quality
of life, satisfaction with care or health care
costs between groups

Rabow et al. Ann Intern Med, 2004)

Palliative Care: Impact on
Outcomes
• Aim: Test effect of in-home palliative care
on clinical and cost outcomes in terminally
ill CHF & COPD patients in an HMO (n=298)
• Intervention by an interdisciplinary team
providing pain and symptom relief, patient
and family education and training, and an
array of medical and social support
services.
• Results: Intervention group
– Had greater satisfaction with care (p<.05)
– Were more likely to die at home (p<.001)
– Had lower health care cost due to fewer ER
visits & hospitalizations
Enguidanos, J Soc Work 2005; 1:37-56
 ICU Setting: Communications
w/Family
• Aim: Compare usual care to proactive EOL
conference + brochure on family bereavement
of patients dying in the ICU
• Sample/Setting: n=126 patients who were
expected to die in a few days in 22 French ICUs
• Intervention: Family conference based on
VALUE
– Value & appreciate what family had to say
– Acknowledge emotions
– Listen
– Ask questions to help caregiver Understand who
patient was as a person
– Elicit questions from family members

Lautrette et al (2007) NEJM, 356: 469-78

 ICU Setting: Communications
w/Family

• Conference time:
– Intervention: 30 mins
– Control: 20 mins
• Time talking by family:
– 14 mins vs. 5 mins
• Telephone interview 90
days post death with
closest family member
– PTSD related symptoms
(45% vs. 69%, p<.01)

Lautrette et al (2007) NEJM, 356: 469-78

Road Map

EOL Symptom
Management

EOL Care Outcomes of

Communications Palliative Care

Palliative Care
Definition & Scope
Symptom Management in COPD

Study to Understand Patient Preference and

Outcomes of Treatment (SUPPORT) found:

• Patients with COPD more likely to die with

poor control of pain and dyspnea than pts
with lung cancer.

• During last 3-6 months of life, prevalence of

dyspnea was 70% and increased to 82%
within the last 3 days before death.

Claessens et al. (SUPPORT) J Am Geriatr Soc 2000; 48(5 Suppl):S146-53

 Symptom Assessment
• Assessment of symptoms is essential to
appropriate management

• History & PE

• Multiple tools to assess symptoms:

– Dyspnea: BORG 0-10 scale, VAS 0-10 or
0-100, Baseline Dyspnea Index (BDI)
– Depression & Anxiety: Beck, HAD, PHQ-9
– Health-Related QOL: Chronic Resp.
Disease Quest. (CRQD), St George’s Resp.
Quest. (SGRQ)
*Depends on purpose – clinical assessment or research/time/setting
Ask the Patient / Family Member

• Dyspnea – rest/exertion*
• Depression/Anxiety
• Pain
• Anorexia
• Cough/Secretions
• Sleep Quality
• Activity level/energy/fatigue
• FEARS or CONCERNS about what the
future holds!

* Focus for SS
Palliation of Dyspnea in COPD

• If possible, identify & treat the underlying

etiology:
– Airway obstruction
– Bronchospasm
– Hypoxemia
– Pleural effusion
– Pneumonia
– Pulmonary Edema
– Cardiac
– Anemia
– Anxiety
 Oxygen Therapy
• Systematic Review focused on O2 for
palliation of dyspnea in COPD, CA, CHF.
• COPD = 5 studies, O2 at rest, baseline
SaO2 levels = 80-99%.
• Results: mixed (1 improved, 2 no diff.,
1 worse, 1 O2 = to air).
• Conclusions: Insufficient evidence for
use of O2 for palliation of dyspnea at
rest unless documented hypoxia.

Booth S, et al. Oxygen.Palliation of Breathlessness. Expert Working Group of the

Scientific Committee (Assoc Palliative Medicine UK) Resp Med 2004; 98:66-77.
Oxygen Therapy cont

• COPD = 26 studies, O2 with exertion.

Baseline SaO2 levels = 82-98%.
• Results
– Pts with hypoxemia had clinically significant
changes in dyspnea
– Pts without hypoxemia had varied to no
differences
• Conclusions: Evidence for use of O2 during
exercise with documented hypoxemia
• No evidence for O2 in CA or CHF unless
documented hypoxia. More studies needed.

Booth S, et al. Oxygen.Palliation of Breathlessness. Expert Working Group of the

Scientific Committee (Assoc Palliative Medicine UK) Resp Med 2004; 98:66-77.
Anxiolytics
• Earlier studies suggested that anxiolytics
may reduce dyspnea in patients with COPD
due to blunting the ventilatory drive,
altering perception and emotional response.
• Further studies have found no effect.
• Side effects: drowsiness, un-coordination,
dysphoria
• Conclusions: Anxiolytics have little or no
effect on dyspnea. May be useful to
interrupt the anxiety-dyspnea cycle. Trial
on an individual basis.
Bronchodilators
• Evidence for support of the use of BR and
anti-cholinergeric agents
(separately/combined) in all patients
diagnosed with COPD for overall treatment
of disease process and related dyspnea
symptoms

• Tiotropium + fluticasone-salmeterol
improved lung function, QOL, and hosp.
rates in mod – severe COPD.

Dyspnea, Mechamisms, Assessment, and Management: A consensus statement. ATS

dyspnea statement. AJRCCM, 1999; 159, 321-340
Aaron, SD et al. Canadian Thoracic Society/Canadian Resp. Clinical Research
Consortium. Ann. Intern Med. 2007, 146, 545-55.
 Pulmonary Rehabilitation
• Comprehensive programs consisting of education,
exercise and breathing training, psychosocial
support.
 Symptoms
 Exercise endurance
  Functional capacity
 Health related quality of life
– (?) Health resource use and costs

• Pts with severe COPD, near the EOL, home based

programs may be an option

• Skills learned in rehab, e.g. breathing

techniques, problem solving may be applied
during EOL period.
ATS/ERS Statement on Pulmonary Rehabilitation. AJRCCM; 2006, 173, 1390-1413
 Complementary Alternative Medicine
(CAM)
Acupuncture
Design/Sample Interventio Results
n
Lewit RCT Cross-over 6 sessions Within group
h w/2 week vs. TENS improvemen
(2004 washout, n=24 sham ts but no
) (randomized group
n=33) differences
Filshi Pre-post test Unclear on #  Dyspnea
e design (n=20 of sessions & anxiety 90
(1996 cancer pts) mins post
)
Jobst Matched controls, 3 weeks  Dyspnea
(1986 n=24 traditional &  6MW
Pan et al. J Pain Symptom Manage. 2000;20(5):374-87.
) Chinese Rx distance
 Complementary Alternative Medicine
(CAM)
Acupressure
Design/ Intervention Results
Sample
Wu RCT (n=44) 20 sessions 16  Dyspnea,
(2004 mins each for 4 anxiety,
) weeks vs. sham 6MW
distance
Maa RCT Cross-over 6 wk self- Small ∆ VAS
(1997 (n=31) administered + dyspnea but
) 12 wk Pulm no ∆ w/Borg
Rehab scale

Pan et al. J Pain Symptom Manage. 2000;20(5):374-87.

Non-Invasive Positive Pressure
Ventilation (NPPV)

• NPPV has been shown to reduce dyspnea in

patients with COPD though no RCTs conducted
specifically with the intent to palliate dyspnea.

• RCT comparing conventional tx vs.

conventional tx + NPPV in pts with ARF due to
exac. of COPD (n=60).

• Results: Dyspnea measured via 0-10 point

VAS showed less dyspnea in NPPV group,
(median 2.3 vs. 4.5) than controls.
Bott, J et al. RCT of nasal ventilation in acute vent. Failure due to COPD. The Lancet, 1993, 341,
1555-1557.
NPPV cont

• Case studies support NPPV use for “buying

time” for EOL care decision making
• Use for patients with COPD who do not wish
life-prolonging therapy, elect comfort care
only, and desire to maintain cognition and
the ability to communicate.
• Benefits must outweigh risks of discomfort
i.e. inability to tolerate mask & expertise to
provide therapy
• Further research is indicated to evaluate
effectiveness for dyspnea reduction.
Curtis JR, et al. NPPV in critical and palliative care settings: Understanding the
goals of therapy. CCM 2007; 35:932-939.
Shee & Green. Non-invasive ventilation and palliation. Palliative Med, 2003, 17,
21-26.
Summary of Dyspnea
Management
Beneficial Therapies:

• O2 therapy in hypoxic patients

• PR - initiate in earlier stages of COPD
• Opioids (PO or IV)
• Bronchodilators/Anticholinergics
• CAM: acupuncture, acupressure

• Future studies on NPPV, use of fans, CAM,

yoga, herbs etc…
Conclusions
• Palliative care not as a service provided
only near the end of life but a
comprehensive service integrated into
chronic disease management.

• Multiple potential benefits of improved

palliative care
– Improved symptom management
– High patient/family satisfaction with care and
clinician communication
– Increased likelihood of the location of death
being outside the hospital
– Improved QOL and quality of dying experience.