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Advance Care Planning in Chronic

Obstructive Pulmonary Disease: Barriers
and Opportunities
Barriers and Opportunities
John E. Heffner
Curr Opin Pulm Med. 2011;17(2):103-109.

Abstract and Introduction

Abstract

Purpose of review Experts in palliative care have increasingly recognized the global epidemic of chronic obstructive
pulmonary disease (COPD), its astonishing rise in prevalence, and its profound impact on patients' quality of life and
functional capacity. Unfortunately, patients with COPD receive less advance care planning (ACP) and palliative care as
compared with patients with other diseases with similar prognoses. This review highlights recent advances in
identifying barriers to ACP and opportunities for providing more effective and timely palliative care.
Recent findings Patients with COPD identify dyspnea as their most disabling symptom. Disease-directed care
provides only partial relief from dyspnea, which eventually becomes refractory and requires transition to palliative care.
Throughout all stages of COPD, however, integrating palliative care with disease-directed treatments improves
patients' well being and functional capacities. Observational studies have identified multiple barriers to effective ACP.
Because of the unique disease trajectory of COPD, professional groups have proposed new models for palliative care
specifically tailored to COPD.
Summary Patients with COPD benefit from better integration of palliative and disease-specific care throughout the
course of their disease from diagnosis to death. Pulmonary rehabilitation may provide a platform for coordinating
integrated care. Health agencies will increasingly expect better coordination of services for patients with this
progressive, disabling, and eventually terminal disease.
Introduction

Experts in palliative care have increasingly recognized the global burden presented by chronic obstructive pulmonary
disease (COPD),[1,2] which is increasing in prevalence at an astonishing rate.[3] A recent international study in 12
countries estimated a 10% prevalence of COPD among adults aged 40 years and older.[4] It is the fourth leading cause
of death worldwide and the only major disease in the United States with an increasing mortality rate.[5] COPD is a
common cause of emergency hospitalizations, most of which result from unpredictable acute exacerbations, which
present considerable risk for respiratory failure and death[6] and underscore the importance of advance care planning
(ACP).

Palliative Care for Chronic Obstructive Pulmonary Disease

Once established, COPD follows a progressive course causing death either from respiratory failure or complications
from its associated diseases, which include coronary artery disease, lung cancer, and stroke.[7] These conditions occur
at a higher rate in patients with COPD as compared to patients with comparable smoking histories but without COPD,
which reflects the multisystem nature of the disease.[8] Among available therapies, only supplemental oxygen prolongs
life whereas all other treatments provide symptomatic relief and, therefore, represent palliative care.[1]
Palliative care benefits patients through all stages of COPD because of patients' high symptom burden that reduces
physical, psychological, and social functioning.[9] Dyspnea is the most common and distressing symptom[2] and
becomes more severe than that experienced from congestive heart failure, renal failure, or lung cancer near the end of
life (EOL).[10] During the midcourse of COPD, dyspnea responds only partially to therapy and eventually becomes
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refractory to routine care, which requires a shift from therapeutic goals of prolonging survival to palliative goals of
relieving symptoms, improving function, and enhancing quality of life. Caregivers with knowledge of the extensive
palliative care resources available for COPD working with informed patients can provide effective relief from refractory
dyspnea[9,11] and help patients maintain a reasonable quality of life.[10,12]
To provide effective palliative care, however, ACP is required, which is especially important for patients with COPD
because of the complex and often unpredictable course of the disease and its multiple comorbidities.[13] Primary care
physicians can initiate ACP by informing patients of the nature and prognosis of the disease and listening to their
needs, life values, and wishes. These discussions allow patients to make informed choices and help ensure that they
receive EOL care consistent with their life values and goals.[14,15]

The Reality of Advance Care Planning in Chronic Obstructive Pulmonary Disease

Unfortunately, the reality of ACP in COPD does not match the need. When compared to terminal lung cancer, patients
with advanced COPD have significantly worse activities of daily living and lower physical, social, and emotional
functioning,[2,16] yet receive less palliative care during their last 6 months of life.[1] Approximately 35% of patients with
cancer and 23% of patients with heart failure die at home in contrast to 16% of patients with COPD.[1] Patients with
COPD have more admissions to an ICU and longer length of stays than patients with lung cancer matched for
prognosis.[1,17,18] During acute exacerbations when symptom burdens are high, patients with COPD infrequently
receive palliative care[12,19] and what services they do receive are usually poorly integrated with disease-directed
care.[1,20]
Communication about ACP is especially limited. Only a minority of patients with COPD have discussed their EOL care
preferences with their physicians[21,22] or received information about the prognosis of their disease and palliative care
services available to manage refractory dyspnea that will eventually occur.[13,23,24] Even after COPD advances to
require home oxygen, many patients remain unaware that they suffer from a life-limiting disease[2,13] and cannot
provide a correct name for their condition.[14] Only 63% of patients dying with COPD despite being housebound with
extensive symptoms and recent admissions knew that they were going to die.[19] During earlier stages of COPD,
patients rarely receive palliative care coordinated with disease-directed care.[12] When ACP discussions do occur,
physician-directed communications typically transpire in the ICU rather than in ambulatory offices during stable phases
of the disease.[25]

Barriers to Advance Care Planning

Multiple barriers exist to ACP for patients with COPD.
1. Physician-centered barriers:
a. Delayed diagnosis of COPD by primary care physicians.
b. Unique disease trajectory with unclear transitions toward EOL.
c. Difficulties in prognosticating clinical course of patients with COPD.
d. Multiple associated comorbidities that alter the clinical course of the disease.
e. Physician reluctance to initiate ACP discussions.
f. Limited physician skills in conducting ACP.
g. Practice environment limitations of time, reimbursement, fragmentation of care.

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h. Limited episodic contact with patients and families that limits insights into their ACP needs, life values,
and preferences.
i. Acute hospital admissions provide poor environments for ACP discussions.
j. Incorrect assumptions that patients with advanced COPD would want treatment limitations.
k. Incorrect coupling of ACP with EOL care with misplaced concerns that ACP will promote patient anxiety
and depression.
l. Assumptions that ACP should begin at the EOL rather than earlier in course of COPD.
2. Patient-centered barriers:
a. Patients may not tell physicians about initial acute exacerbations.
b. Assumptions that physicians will initiate ACP discussions when they are needed.
c. Avoidance of ACP discussions out of fear or denial.
d. Poor understanding of the nature and prognosis of COPD.
e. Misperceptions that ACP discussions are intended to deny necessary life-supportive care.
f. Depression, anxiety, social isolation, learned helplessness, and cognitive impairment.
Many primary care physicians have a limited understanding of COPD and fail to diagnose the disease with onset of
early symptoms, with many patients remaining undiagnosed until hospitalization for an acute exacerbation of severe
disease.[26] Patients often fail to report or recognize milder exacerbations and attribute symptoms to 'chest colds,'
which further delays diagnosis and ACP.
The disease trajectory of COPD represents an additional barrier. Patients experience a gradual decline in physical
capacities over many years punctuated by episodic acute exacerbations followed by functional improvements that
usually do not reach previous baseline levels (Fig. 1).[10,28] This trajectory contrasts with advanced cancers, which
usually provide more obvious transitions toward EOL and signals for ACP. The episodic deteriorations and partial
recoveries with COPD lull physicians into thinking ACP can wait until a future date and clouds the definition of what
constitutes 'end of life' because points of transition are so poorly recognizable.[13]

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Figure 1.

Model for integrating palliative care with disease-directed care for patients with chronic obstructive
pulmonary disease
Palliative care (dashed line) and disease-directed care (solid line) both begin with diagnosis of chronic obstructive
pulmonary disease (COPD) and vary in intensity in absolute terms and relative to each other depending on the point in
the trajectory of the disease, which includes periods of clinical stability, gradual symptom progression, and acute
exacerbations (asterisks). Eventually, the lines cross as patients approach the end of life (EOL). Because it is not
possible to predict an individual patient's clinical course, using advance care planning (ACP) discussions with patients
and their families allows establishment of appropriate goals and integration of care to meet their needs and
preferences. Modified with permission from [1,27].
Although the classic trajectory applies to general populations of patients, individual patients follow an even more
variable course because COPD has multiple phenotypes,[29] each of which carries different sets of symptoms and
prognoses that further complicate ACP. Even experienced physicians who believe that they can select patients for
ACP by COPD stage may miss opportunities because associated comorbidities, such as coronary artery disease or
pulmonary embolism, may cause sudden death in advance of progression of COPD.[7,10] These medical and mental
health comorbidities have a greater impact on social and emotional functioning and need for palliative care than does
the severity of the underlying COPD.[10]
Prognosis represents an important influence on physicians' selection of patients for ACP.[12,30] Unfortunately,
physicians demonstrate poor prognosticating abilities in managing advanced COPD. For patients later found to be in
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their last week of life, their physicians had estimated a 40% likelihood of 6 months or more of survival.[14] Spirometric
measures, such as FEV1, have inadequate predictive abilities for individual patients. Indices that capture the
pulmonary and systemic manifestations of COPD perform better than FEV1 alone. The Body massairflow
ObstructionDyspneaExercise (BODE) index, for instance, incorporates multiple dimensions and predicts a 52-week
mortality of 80% for patients with BODE scores greater than 7.[1] It underestimates 3-year mortality, however, in older
patients and those with their first COPD-related hospitalization.[16] The AgeDyspneaObstruction (ADO) index
predicts 3-year mortality in advanced COPD, but it, like the BODE index and all other predictors, performs relatively
well for populations of patients but insufficiently for individual patients to time ACP discussions.[16,23,31,32]
Even if physicians could identify patients with poor prognoses, they would likely still have difficulty discussing ACP.[14]
Physicians infrequently initiate discussions about ACP during stable periods of COPD, and when discussions do occur,
they tend to be of poor quality.[16] Although primary care physicians acknowledge the importance of discussing
prognosis in advanced COPD, they feel inadequately prepared.[19] They also cite as additional barriers inadequate
time, reimbursement for ACP discussions, limited resources, and fragmented coordination between healthcare and
palliative care services.[19] Because physicians have infrequent interactions with stable patients and their families, they
have little insight into their patients' knowledge of their disease or their palliative care needs.[12] They also
underestimate patients' interest in learning more about their disease or life-supportive care that may be eventually
required.[10]
Physician communication of palliative care and ACP issues during acute admissions is similarly incomplete. Families
of patients who die during a hospitalization often report that physicians did not initiate discussions that informed
patients or their families about the progressive nature of COPD or the types of life-supportive care that may be
required.[33] Patients who do receive inpatient ACP have limited capacity, because of impaired cognition or distractions
from acute interventions, to make critical decisions about their long-term care.[2,13,28,34]
Attitudinal and knowledge barriers also exist among physicians. Physicians voice concern that ACP discussions may
engender patient depression and anxiety by redirecting their focus from improving functional abilities toward death and
dying.[12,13] Physicians may assume that patients with advanced COPD would not want life-prolonging care and
disregard the need for ACP discussions even though observational studies do not support a correlation between health
status and EOL treatment preferences among patients with COPD.[35] Many physicians confuse ACP and palliative
care by equating them with EOL care and hospice services,[1] failing to understand that the unique trajectory of COPD
and its incomplete responsiveness to therapy require simultaneous application of disease-directed and palliative care.
[14] Moreover, physicians may not recognize that palliative care can begin at the point of diagnosis of life-limiting
conditions, such as COPD, rather than at the terminal phase.[1,13]
How patients cope with their disease presents additional barriers and some opportunities for ACP. Patients expect their
physicians to start ACP discussions and perceive an absence of such discussions as evidence they are not yet
needed.[10] Patients may not bring up ACP out of fear or denial of the seriousness of their disease even when
prompted to do so.[14] But most patients identify education about diagnosis, treatment, what dying might be like, and
ACP as important.[1,14] They prefer these discussions to occur during intervals of good health.[28]
Effective ACP depends on patients having a clear understanding of their disease and its prognosis, which allows them
to voice their wishes for palliative and EOL care.[14] Many but not all patients with COPD, however, desire prognostic
disclosure.[14,36] Refusing information on prognosis may be a coping strategy for some patients. When patients do not
desire prognostic information, family members often do. Regarding life support interventions, patients with advanced
COPD enrolled in pulmonary rehabilitation want to discuss ACP with their physicians although only 14% believed their
doctors knew their EOL wishes.[37] Although patients with COPD may desire treatment limitations when death
becomes inevitable, physicians usually cannot provide sufficient prognostic certainty, and patients consequently worry
that their physicians may give up too soon.[15]
Mental health problems present additional barriers to ACP. Patients with COPD experience depression and anxiety,
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which develop in 1042% and 1019% of patients, respectively.[16,38] Depression is linked to increased hospital
readmissions, longer length of stays, and disabilities,[1,39,40] and severely depressed patients have a 2.7-fold
increase in 3-year mortality rate.[16] Depression affects ACP choices with depressed patients demonstrating a greater
bias against resuscitation.[35] Moreover, depression leads to social isolation and loneliness,[2,10] which are also
experienced by patients' family caregivers who may then lose their interest in encouraging patients toward ACP.[41]
Patients with COPD attach stigma to their condition, which they perceive as self-inflicted and shame and guilt
provoking.[10,42] They learn a sense of helplessness that saps their ability for self-management and engaging their
physicians in ACP.[43] Patients feeling shame may hide their dyspnea ('silent dyspnea'), which leads physicians to
minimize the COPD stage and need for ACP.[44] Patients with COPD also have a pattern of cognitive dysfunction that
worsens with severity of lung disease and interferes with ACP.[45]

Opportunities for Improving Advance Care Planning for Patients with Chronic Obstructive
Pulmonary Disease
International awareness is growing that patients with COPD need greater access to palliative care services. In the
United Kingdom, a national service framework for COPD is being developed to improve the quality of care for patients
with COPD, and a recently published EOL care strategy for England emphasizes the importance of appropriate care
for patients with advanced nonmalignant conditions.[14] The UK National Council for Palliative Care has formed a
chronic respiratory disease policy group.[23] Pulmonary professional societies have published guidelines on palliative
care for patients with chronic respiratory diseases[27,46] and leaders in pulmonary rehabilitation have recognized that
the goals of pulmonary rehabilitation and palliative care overlap, with both services addressing symptom management
to promote patient independence and sense of well-being.[10,34,37,47] The incorporation of palliative care into
pulmonary rehabilitation provides an effective model for promoting ACP for patients with COPD by facilitating better
communication between patient, family, and physician.[10,47] Although patients prefer doctors to discuss ACP, they
accept other healthcare professionals as sources of advance planning information.[13,21]
Physicians, however, represent the primary communicators for ACP and, as such, need to access available resources
to diagnose COPD at an earlier stage[48] and gain a better understanding of palliative care resources and how to
discuss ACP with patients.[1] Investigators are studying methods to help physicians frame conversations in the context
of 'hoping for the best and planning for the worst',[49] assessing whether patients welcome such conversations by
using an 'asktellask' format,[50] and introducing preprinted forms and other decision support tools to determine
patients' EOL preferences.[51] But an urgent need exists to identify additional strategies to enhance patientphysician
communication to realize the objectives of ACP.
Most importantly, new models of continuous palliative care specifically tailored for patients with COPD require
validation. These models start palliative care at the time of COPD diagnosis and integrate palliative services with
disease-directed treatments as needed with patient-centered goals during the progression of the disease.[1] Palliative
care in this model represents a life-long, essential component of healthcare, starting at a low base and rising
eventually to become the predominant theme.[1,13] Specific to COPD, palliative care can increase in response to
acute exacerbations and decrease as allowed with recovery of patients toward baseline function. Observations that
patients with COPD enrolled in palliative care programs are eight times more likely to die at home as compared with
patients managed by usual care underscore the value of this model.[1]
Timing of ACP discussions, however, remains a challenge for many physicians at least partly because cessation of
curative treatment is too often considered a distinct event forcing patients to arbitrarily choose between diseasedirected care and palliative care. Various sources have recommended specific thresholds for targeting patients with
COPD for prompting ACP discussions in this dichotomous model:[1,23,52,53]
1. Canadian Thoracic Society guidelines:[52]
a. Any one of the following:
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i. FEV1 less than 40%.

ii. Medical Research Council Dyspnea Scale score of 4 or 5.
iii. Recurrent severe acute exacerbations requiring hospitalization.
iv. Poor nutritional status with a BMI less than 19 kg/m2.
2. Curtis et al.:[53]
a. Two or more of the following:
i. FEV1 less than 30% predicted.
ii. Oxygen dependence.
iii. One or more hospital admissions in prior year for exacerbation, left heart failure or other
comorbidities.
iv. Weight loss or cachexia.
v. Decreased functional status
vi. Increasing dependence on others.
vii. Age more than 70 years.
3. Partridge et al.:[23]
a. The treating physician would not be surprised if the patient died within the next 12 months.
4. Hardin et al.:[1]
a. Global initiative for chronic obstructive lung disease (GOLD) stages II through IV.
b. At least two admissions per year for exacerbations.
c. BODE index score greater than 5.
d. ICU admission for respiratory failure.
e. Home noninvasive positive pressure ventilation.
f. Supplemental oxygen requirement.
g. Patients with more than 10% decrease in body weight in 6 months or BMI less than 21 kg/m2.
h. Concomitant congestive heart failure.
i. Patients with transplant or lung volume reduction surgery before or after.
j. Lack of home support system.
k. Presence of anxiety or depression.

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l. Patients expressing poor symptom control.

m. Patients who are unable to meet their activities of daily living.
But these signposts are often poorly recognized by either patients or clinicians, seldom serve as effective triggers, and
derive from physicians' perspectives. Transitions of care should also be examined from the patient and family
members' perspectives, which allows clinicians to target ACP discussions based on patient's self-perceived needs.[28]
Different patients perceive different transitions that span a range of issues including changes in therapeutic options but
also changes in symptoms, quality of life, and functional status.[28] Interventions that utilize an individualized approach
to understanding and addressing transitions of care may result in increased patient and family satisfaction with care,
decreased fear and anxiety, and overall improved healthcare experience.[28]
In regard to timing ACP discussions, recent guidelines recommend that patients with chronic respiratory disease
should have palliative care available throughout the course of their disease with greater emphasis on palliative
measures as symptoms increase.[1,27] The Consensus Project for Quality Palliative Care emphasizes that palliative
care should begin in the primary care setting in the course of routine care.[1] Considering the uncertainty of predicting
the course of COPD, it seems reasonable to offer palliative care services at the time of diagnosis while simultaneously
treating and preventing the underlying disease and associated comorbid conditions.[10]

Conclusion
Although medical care has incorporated ACP precepts for decades, it became sanctioned in the United States in 1990
when congress passed the Patient Self-Determination Act, which affirmed the right for individuals to refuse unwanted
therapies and promoted advance directives. Unfortunately, these efforts redirected discussions from ACP and palliative
care in general to more narrow efforts to document advance directives.[15,54] Clinicians who manage patients with
COPD need to uncouple ACP from terminal care[13,54] and regain a broader view of ACP that integrates palliative
care with disease-directed care beginning with diagnosis of COPD. The complex nature of COPD presents challenges
to integrating medical, social, and palliative care and requires more proactive models of ACP and palliative care to
meet these challenges and the needs of patients with this progressive and terminal disease.[2,55,56]
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2008; 5:207220.
2. Gardiner C, Gott M, Payne S, et al. Exploring the care needs of patients with advanced COPD: an overview of
the literature. Respir Med 2010; 104:159165.
This comprehensive literature review focuses on the growing recognition that patients with COPD need more
palliative care than they receive, lists common barriers, and proposes strategies that may improve care.
3. Gershon AS, Wang C, Wilton AS, et al. Trends in chronic obstructive pulmonary disease prevalence, incidence,
and mortality in Ontario, Canada, 1996 to 2007: a population-based study. Arch Intern Med 2010; 170:560565.
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makes the important observation that many patients with COPD do not report acute exacerbations of their
disease. Not only do they miss opportunities for dyspnea relief during the exacerbations, but also Xu et al.
found a deterioration of quality of life a year after unreported exacerbations.
7. Schneider C, Bothner U, Jick SS, Meier CR. Chronic obstructive pulmonary disease and the risk of
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8. Almagro P, Lopez Garcia F, Cabrera F, et al. Comorbidity and gender-related differences in patients hospitalized
for COPD. The ECCO study. Respir Med 2010; 104:253259.
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pulmonary disease. Wien Med Wochenshr 2009; 159:583590.
10. McCormick JR. Pulmonary rehabilitation and palliative care. Semin Respir Crit Care Med 2009; 30:684699.
Although our research group proposed 20 years ago that pulmonary rehabilitation represented an ideal
resource for introducing patients with COPD to ACP discussions, most programs do not focus on advance
planning. This commentary presents a solid rationale for integrating ACP into pulmonary rehabilitation and
should help to encourage more communication between pulmonary rehabilitation clinicians and palliative care
practitioners.
11. Varkey B. Opioids for palliation of refractory dyspnea in chronic obstructive pulmonary disease patients. Curr
Opin Pulm Med 2010; 16:150154.
This article is an excellent resource for clinicians whose patients have transitioned from manageable to
refractory dyspnea. Often physicians become frustrated with the challenges of caring for such patients; this
resource helps integrate diseasedirected and palliative care.
12. Spence A, Hasson F, Waldron M, et al. Professionals delivering palliative care to people with COPD: qualitative
study. Palliat Med 2009; 23:126131.
Assessing physicians' attitudes regarding ACP discussions for identifying barriers and facilitators represents
an important line of research. This study determined that physicians felt ill prepared to engage in these
discussions and also had poor understanding of available palliative care resources. Clearly assistance is
needed to help physicians develop skills for communicating with their patients about ACP.
13. Gott M, Gardiner C, Small N, et al. Barriers to advance care planning in chronic obstructive pulmonary disease.
Palliat Med 2009; 23:642648.
This study not only identified multiple barriers to ACP from the patient perspective but also established an
important concept in COPD palliative care: how do we clarify 'end of life' in the context of the unique disease
trajectory of COPD? Patients with COPD expressed confusion regarding the end-of-life term, which challenges
us to better define this life transition for patients with advanced disease.
14. Gardiner C, Gott M, Small N, et al. Living with advanced chronic obstructive pulmonary disease: patients
concerns regarding death and dying. Palliat Med 2009; 23:691697.
It remains humbling that healthcare professionals have fallen short in helping our patients understand the
nature of COPD and its prognostic implications. Using semi-structured interview techniques, these investigators
found that patients harbor fears about the progression of their disease and want more information, which
provides data to counter physician misperceptions that initiating ACP discussions with patients will aggravate
their concerns.
15. Fried TR, Drickamer M. Garnering support for advance care planning. JAMA 2010; 303:269270.
The recent public polemic around healthcare reform and ACP (i.e., 'death panels') represents another barrier
to gaining reimbursement support for meeting our patients' expressed advance planning needs. This
commentary allows us to decipher the underpinnings of this discourse and how to avoid allowing it to misdirect
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our efforts to promote ACP for our patients.

16. Gelberg J, McIvor RA. Overcoming gaps in the management of chronic obstructive pulmonary disease in older
patients: new insights. Drugs Aging 2010; 27:367375.
17. Au DH, Udris EM, Fihn SD, et al. Differences in healthcare utilization at the end of life among patients with
chronic obstructive pulmonary disease and patients with lung cancer. Arch Intern Med 2006; 166:326331.
18. Mularski RA, Osborne ML. End-of-life care in the critically ill geriatric population. Crit Care Clin 2003; 19:789
810, viii.
19. Elkington H, White P, Addington-Hall J, et al. The last year of life of COPD: a qualitative study of symptoms and
services. Respir Med 2004; 98:439445.
20. Goodridge D, Lawson J, Duggleby W, et al. Healthcare utilization of patients with chronic obstructive pulmonary
disease and lung cancer in the last 12 months of life. Respir Med 2008; 102:885891.
21. Heffner JE, Fahy B, Hilling L, Barbieri C. Attitudes regarding advance directives among patients in pulmonary
rehabilitation. Am J Respir Crit Care Med 1996; 154:17351740.
22. Heffner JE, Fahy B, Hilling L, Barbieri C. Outcomes of advance directive education of pulmonary rehabilitation
patients. Am J Respir Crit Care Med 1997; 155:10551059.
23. Partridge MR, Khatri A, Sutton L, et al. Palliative care services for those with chronic lung disease. Chron
Respir Dis 2009; 6:1317.
24. Mulcahy P, Buetow S, Osman L, et al. GPs' attitudes to discussing prognosis in severe COPD: an Auckland
(NZ) to London (UK) comparison. Fam Pract 2005; 22:538540.
25. McNeely PD, Hebert PC, Dales RE, et al. Deciding about mechanical ventilation in end-stage chronic
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chronic obstructive pulmonary disease or advanced cancer: themes identified by patients, families, and
clinicians. J Palliat Med 2008; 11:601609.
29. Han MK, Agusti A, Calverley PM, et al. COPD phenotypes: the future of COPD. Am J Respir Crit Care Med
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persons with advanced illness. J Gen Intern Med 2009; 24:923928.
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obstructive pulmonary disease: the updated BODE index and the ADO index. Lancet 2009; 374:704711.
Primary care physicians have begun to apply prognosticating indices for identifying patients with COPD for
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ACP. This study emphasizes the considerable imprecision of these indices when applied to individual patients.
Studies such as this one support the concept that we cannot predict the future for individual patients and should
initiate ACP discussions whenever we have the opportunity.
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departments: predictors of outcome. Curr Opin Pulm Med 2010; 16:112117.
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caregivers, and clinicians. J Am Geriatr Soc 2003; 51:13981403.
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Previously, observational studies have reported the high prevalence of depression among patients with
COPD. This study is important because it extends these observations by examining potential causes of
depression and finding an association between the onset of disabilities and depression symptoms, which may
help physicians identify patients in need of preventive strategies such as early cognitive therapy.
40. Blinderman CD, Homel P, Billings JA, et al. Symptom distress and quality of life in patients with advanced
chronic obstructive pulmonary disease. J Pain Symptom Manage 2009; 38:115123.
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Palliat Care 2008; 24:4954.
42. Lindqvist G, Hallberg LR. 'Feelings of guilt due to self-inflicted disease': a grounded theory of suffering from
chronic obstructive pulmonary disease (COPD). J Health Psychol 2010; 15:456466.
43. Omachi TA, Katz PP, Yelin EH, et al. The COPD Helplessness Index: a new tool to measure factors affecting
patient self-management. Chest 2010; 137:823830.
Psychological factors represent important barriers to patients' self-management skills, which have important
implications regarding their motivation to seek ACP with their physicians. This study applies learned
helplessness theory to COPD and posits that the unanticipated acute exacerbations of the disease promote a
sense of helplessness, which can now be measured for individual patients by the COPD Helplessness Index
they developed.
44. Gysels M, Higginson IJ. Access to services for patients with chronic obstructive pulmonary disease: the
invisibility of breathlessness. J Pain Symptom Manage 2008; 36:451460.

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45. Dodd JW, Getov SV, Jones PW. Cognitive function in COPD. Eur Respir J 2010; 35:913922.
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diseases: American College of Chest Physicians position statement. Chest 2005; 128:35993610.
47. Sachs S, Weinberg RL. Pulmonary rehabilitation for dyspnea in the palliative-care setting. Curr Opin Support
Palliat Care 2009; 3:112119.
This concise commentary provides more specific logistical information about how ACP can fit into the other
services commonly provided in pulmonary rehabilitation programs. The discussion provides a common ground
for pulmonary rehabilitation providers and palliative care clinicians to develop integrated programs.
48. Hanania NA, Mannino DM, Yawn BP, et al. Predicting risk of airflow obstruction in primary care: validation of the
lung function questionnaire (LFQ). Respir Med 2010 [Epub ahead of print].
49. Back AL, Arnold RM, Quill TE. Hope for the best, and prepare for the worst. Ann Intern Med 2003; 138:439
443.
50. White DB, Braddock CHr, Bereknyei S, Curtis JR. Toward shared decision making at the end of life in intensive
care units: opportunities for improvement. Arch Intern Med 2007; 167:461467.
51. Hickman SE, Nelson CA, Perrin NA, et al. A comparison of methods to communicate treatment preferences in
nursing facilities: traditional practices versus the physician orders for life-sustaining treatment program. J Am
Geriatr Soc 2010; 58:12411248.
52. O'Donnell DE, Hernandez P, Kaplan A, et al. Canadian Thoracic Society recommendations for management of
chronic obstructive pulmonary disease 2008 update highlights for primary care. Can Respir J 2008;
15(Suppl A):1A8A.
53. Curtis JR. Palliative and end-of-life care for patients with severe COPD. Eur Respir J 2008; 32:796803.
54. Fried TR, O'Leary JR. Using the experiences of bereaved caregivers to inform patient- and caregiver-centered
advance care planning. J Gen Intern Med 2008; 23:16021607.
55. Gysels M, Higginson IJ. The experience of breathlessness: the social course of chronic obstructive pulmonary
disease. J Pain Symptom Manage 2010; 39:555563.
56. Habraken JM, Pols J, Bindels PJ, Willems DL. The silence of patients with end-stage COPD: a qualitative study.
Br J Gen Pract 2008; 58:844849.
Papers of particular interest, published within the annual period of review, have been highlighted as:
of special interest
of outstanding interest
Additional references related to this topic can also be found in the Current World Literature section in this issue
(p. 129).
Acknowledgement
The author thanks Megan Robertson, Amy Roth, and Peggy Baldwin for reference identification and retrieval
assistance.
Curr Opin Pulm Med. 2011;17(2):103-109. 2011 Lippincott Williams & Wilkins

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