Paliative Care Guideline

9/3/15, 12:37 PM

of 12http://www.medscape.com/viewarticle/738113_print

www.medscape.com

Barriers and Opportunities

Abstract and IntroductionAbstract

Purpose of review Experts in palliative care have increasingly recognized the global epidemic of chronic obstructivepulmonary disease (COPD), its astonishing rise in prevalence, and its profound impact on patients' quality of life andfunctional capacity. Unfortunately, patients with COPD receive less advance care planning (ACP) and palliative care ascompared with patients with other diseases with similar prognoses. This review highlights recent advances inidentifying 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 careprovides 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 improvespatients' 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 carespecifically tailored to COPD.Summary Patients with COPD benefit from better integration of palliative and disease-specific care throughout thecourse of their disease from diagnosis to death. Pulmonary rehabilitation may provide a platform for coordinatingintegrated care. Health agencies will increasingly expect better coordination of services for patients with thisprogressive, disabling, and eventually terminal disease.

Introduction

Experts in palliative care have increasingly recognized the global burden presented by chronic obstructive pulmonarydisease (COPD),[1,2•] which is increasing in prevalence at an astonishing rate.[3] A recent international study in 12countries estimated a 10% prevalence of COPD among adults aged 40 years and older.[4] It is the fourth leading causeof death worldwide and the only major disease in the United States with an increasing mortality rate.[5] COPD is acommon cause of emergency hospitalizations, most of which result from unpredictable acute exacerbations, whichpresent 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 complicationsfrom its associated diseases, which include coronary artery disease, lung cancer, and stroke.[7] These conditions occurat 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 prolongslife 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 reducesphysical, psychological, and social functioning.[9] Dyspnea is the most common and distressing symptom[2•] andbecomes more severe than that experienced from congestive heart failure, renal failure, or lung cancer near the end oflife (EOL).[10••] During the midcourse of COPD, dyspnea responds only partially to therapy and eventually becomes

Advance Care Planning in ChronicObstructive Pulmonary Disease: Barriersand Opportunities

John E. HeffnerCurr Opin Pulm Med. 2011;17(2):103-109.

http://www.medscape.com/

9/3/15, 12:37 PM


refractory to routine care, which requires a shift from therapeutic goals of prolonging survival to palliative goals ofrelieving symptoms, improving function, and enhancing quality of life. Caregivers with knowledge of the extensivepalliative care resources available for COPD working with informed patients can provide effective relief from refractorydyspnea[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 COPDbecause of the complex and often unpredictable course of the disease and its multiple comorbidities.[13••] Primary carephysicians can initiate ACP by informing patients of the nature and prognosis of the disease and listening to theirneeds, life values, and wishes. These discussions allow patients to make informed choices and help ensure that theyreceive 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, patientswith advanced COPD have significantly worse activities of daily living and lower physical, social, and emotionalfunctioning,[2•,16] yet receive less palliative care during their last 6 months of life.[1] Approximately 35% of patients withcancer and 23% of patients with heart failure die at home in contrast to 16% of patients with COPD.[1] Patients withCOPD have more admissions to an ICU and longer length of stays than patients with lung cancer matched forprognosis.[1,17,18] During acute exacerbations when symptom burdens are high, patients with COPD infrequentlyreceive palliative care[12••,19] and what services they do receive are usually poorly integrated with disease-directedcare.[1,20]

Communication about ACP is especially limited. Only a minority of patients with COPD have discussed their EOL carepreferences with their physicians[21,22] or received information about the prognosis of their disease and palliative careservices available to manage refractory dyspnea that will eventually occur.[13••,23,24] Even after COPD advances torequire home oxygen, many patients remain unaware that they suffer from a life-limiting disease[2•,13••] and cannotprovide a correct name for their condition.[14•] Only 63% of patients dying with COPD despite being housebound withextensive 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 phasesof 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.

9/3/15, 12:37 PM


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 anxietyand 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 ofearly symptoms, with many patients remaining undiagnosed until hospitalization for an acute exacerbation of severedisease.[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 physicalcapacities over many years punctuated by episodic acute exacerbations followed by functional improvements thatusually do not reach previous baseline levels (Fig. 1).[10••,28] This trajectory contrasts with advanced cancers, whichusually provide more obvious transitions toward EOL and signals for ACP. The episodic deteriorations and partialrecoveries with COPD lull physicians into thinking ACP can wait until a future date and clouds the definition of whatconstitutes 'end of life' because points of transition are so poorly recognizable.[13••]

9/3/15, 12:37 PM


Figure 1.

Model for integrating palliative care with disease-directed care for patients with chronic obstructivepulmonary disease Palliative care (dashed line) and disease-directed care (solid line) both begin with diagnosis of chronic obstructivepulmonary disease (COPD) and vary in intensity in absolute terms and relative to each other depending on the point inthe trajectory of the disease, which includes periods of clinical stability, gradual symptom progression, and acuteexacerbations (asterisks). Eventually, the lines cross as patients approach the end of life (EOL). Because it is notpossible to predict an individual patient's clinical course, using advance care planning (ACP) discussions with patientsand their families allows establishment of appropriate goals and integration of care to meet their needs andpreferences. Modified with permission from [1,27].

Although the classic trajectory applies to general populations of patients, individual patients follow an even morevariable course because COPD has multiple phenotypes,[29] each of which carries different sets of symptoms andprognoses that further complicate ACP. Even experienced physicians who believe that they can select patients forACP by COPD stage may miss opportunities because associated comorbidities, such as coronary artery disease orpulmonary embolism, may cause sudden death in advance of progression of COPD.[7,10••] These medical and mentalhealth comorbidities have a greater impact on social and emotional functioning and need for palliative care than doesthe 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

9/3/15, 12:37 PM


their last week of life, their physicians had estimated a 40% likelihood of 6 months or more of survival.[14•] Spirometricmeasures, such as FEV1, have inadequate predictive abilities for individual patients. Indices that capture thepulmonary and systemic manifestations of COPD perform better than FEV1 alone. The Body mass–airflowObstruction–Dyspnea–Exercise (BODE) index, for instance, incorporates multiple dimensions and predicts a 52-weekmortality of 80% for patients with BODE scores greater than 7.[1] It underestimates 3-year mortality, however, in olderpatients and those with their first COPD-related hospitalization.[16] The Age–Dyspnea–Obstruction (ADO) indexpredicts 3-year mortality in advanced COPD, but it, like the BODE index and all other predictors, performs relativelywell 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 discussingprognosis in advanced COPD, they feel inadequately prepared.[19] They also cite as additional barriers inadequatetime, reimbursement for ACP discussions, limited resources, and fragmented coordination between healthcare andpalliative care services.[19] Because physicians have infrequent interactions with stable patients and their families, theyhave little insight into their patients' knowledge of their disease or their palliative care needs.[12••] They alsounderestimate patients' interest in learning more about their disease or life-supportive care that may be eventuallyrequired.[10••]

Physician communication of palliative care and ACP issues during acute admissions is similarly incomplete. Familiesof patients who die during a hospitalization often report that physicians did not initiate discussions that informedpatients or their families about the progressive nature of COPD or the types of life-supportive care that may berequired.[33] Patients who do receive inpatient ACP have limited capacity, because of impaired cognition or distractionsfrom 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 mayengender patient depression and anxiety by redirecting their focus from improving functional abilities toward death anddying.[12••,13••] Physicians may assume that patients with advanced COPD would not want life-prolonging care anddisregard the need for ACP discussions even though observational studies do not support a correlation between healthstatus and EOL treatment preferences among patients with COPD.[35] Many physicians confuse ACP and palliativecare by equating them with EOL care and hospice services,[1] failing to understand that the unique trajectory of COPDand 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-limitingconditions, 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 theirphysicians to start ACP discussions and perceive an absence of such discussions as evidence they are not yetneeded.[10••] Patients may not bring up ACP out of fear or denial of the seriousness of their disease even whenprompted to do so.[14•] But most patients identify education about diagnosis, treatment, what dying might be like, andACP 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 themto voice their wishes for palliative and EOL care.[14•] Many but not all patients with COPD, however, desire prognosticdisclosure.[14•,36] Refusing information on prognosis may be a coping strategy for some patients. When patients do notdesire prognostic information, family members often do. Regarding life support interventions, patients with advancedCOPD enrolled in pulmonary rehabilitation want to discuss ACP with their physicians although only 14% believed theirdoctors knew their EOL wishes.[37] Although patients with COPD may desire treatment limitations when deathbecomes inevitable, physicians usually cannot provide sufficient prognostic certainty, and patients consequently worrythat their physicians may give up too soon.[15••]

Mental health problems present additional barriers to ACP. Patients with COPD experience depression and anxiety,

9/3/15, 12:37 PM


which develop in 10–42% and 10–19% of patients, respectively.[16,38] Depression is linked to increased hospitalreadmissions, longer length of stays, and disabilities,[1,39•,40] and severely depressed patients have a 2.7-foldincrease in 3-year mortality rate.[16] Depression affects ACP choices with depressed patients demonstrating a greaterbias against resuscitation.[35] Moreover, depression leads to social isolation and loneliness,[2•,10••] which are alsoexperienced 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 guiltprovoking.[10••,42] They learn a sense of helplessness that saps their ability for self-management and engaging theirphysicians in ACP.[43••] Patients feeling shame may hide their dyspnea ('silent dyspnea'), which leads physicians tominimize the COPD stage and need for ACP.[44] Patients with COPD also have a pattern of cognitive dysfunction thatworsens with severity of lung disease and interferes with ACP.[45]

Opportunities for Improving Advance Care Planning for Patients with Chronic ObstructivePulmonary Disease

International awareness is growing that patients with COPD need greater access to palliative care services. In theUnited Kingdom, a national service framework for COPD is being developed to improve the quality of care for patientswith COPD, and a recently published EOL care strategy for England emphasizes the importance of appropriate carefor patients with advanced nonmalignant conditions.[14•] The UK National Council for Palliative Care has formed achronic respiratory disease policy group.[23] Pulmonary professional societies have published guidelines on palliativecare for patients with chronic respiratory diseases[27,46] and leaders in pulmonary rehabilitation have recognized thatthe goals of pulmonary rehabilitation and palliative care overlap, with both services addressing symptom managementto promote patient independence and sense of well-being.[10••,34,37,47•] The incorporation of palliative care intopulmonary rehabilitation provides an effective model for promoting ACP for patients with COPD by facilitating bettercommunication between patient, family, and physician.[10••,47•] Although patients prefer doctors to discuss ACP, theyaccept 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 resourcesto diagnose COPD at an earlier stage[48] and gain a better understanding of palliative care resources and how todiscuss ACP with patients.[1] Investigators are studying methods to help physicians frame conversations in the contextof 'hoping for the best and planning for the worst',[49] assessing whether patients welcome such conversations byusing an 'ask–tell–ask' format,[50] and introducing preprinted forms and other decision support tools to determinepatients' EOL preferences.[51] But an urgent need exists to identify additional strategies to enhance patient–physiciancommunication to realize the objectives of ACP.

Most importantly, new models of continuous palliative care specifically tailored for patients with COPD requirevalidation. These models start palliative care at the time of COPD diagnosis and integrate palliative services withdisease-directed treatments as needed with patient-centered goals during the progression of the disease.[1] Palliativecare in this model represents a life-long, essential component of healthcare, starting at a low base and risingeventually to become the predominant theme.[1,13••] Specific to COPD, palliative care can increase in response toacute exacerbations and decrease as allowed with recovery of patients toward baseline function. Observations thatpatients with COPD enrolled in palliative care programs are eight times more likely to die at home as compared withpatients 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 ofcurative treatment is too often considered a distinct event forcing patients to arbitrarily choose between disease-directed care and palliative care. Various sources have recommended specific thresholds for targeting patients withCOPD for prompting ACP discussions in this dichotomous model:[1,23,52,53]

1. Canadian Thoracic Society guidelines:[52]

a. Any one of the following:

9/3/15, 12:37 PM


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 othercomorbidities.

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.

9/3/15, 12:37 PM


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, andderive from physicians' perspectives. Transitions of care should also be examined from the patient and familymembers' 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 butalso changes in symptoms, quality of life, and functional status.[28] Interventions that utilize an individualized approachto 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 diseaseshould have palliative care available throughout the course of their disease with greater emphasis on palliativemeasures as symptoms increase.[1,27] The Consensus Project for Quality Palliative Care emphasizes that palliativecare should begin in the primary care setting in the course of routine care.[1] Considering the uncertainty of predictingthe course of COPD, it seems reasonable to offer palliative care services at the time of diagnosis while simultaneouslytreating 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 1990when congress passed the Patient Self-Determination Act, which affirmed the right for individuals to refuse unwantedtherapies and promoted advance directives. Unfortunately, these efforts redirected discussions from ACP and palliativecare in general to more narrow efforts to document advance directives.[15••,54] Clinicians who manage patients withCOPD need to uncouple ACP from terminal care[13••,54] and regain a broader view of ACP that integrates palliativecare with disease-directed care beginning with diagnosis of COPD. The complex nature of COPD presents challengesto integrating medical, social, and palliative care and requires more proactive models of ACP and palliative care tomeet these challenges and the needs of patients with this progressive and terminal disease.[2•,55,56]

References

1. Hardin KA, Meyers F, Louie S. Integrating palliative care in severe chronic obstructive lung disease. COPD2008; 5:207–220.

2. Gardiner C, Gott M, Payne S, et al. Exploring the care needs of patients with advanced COPD: an overview ofthe literature. Respir Med 2010; 104:159–165.• This comprehensive literature review focuses on the growing recognition that patients with COPD need morepalliative 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; 170:560–565.

4. Buist AS, McBurnie MA, Vollmer WM, et al. International variation in the prevalence of COPD (the BOLDStudy): a population-based prevalence study. Lancet 2007; 370:741–750.

5. Brown DW, Croft JB, Greenlund KJ, Giles WH. Trends in hospitalization with chronic obstructive pulmonarydisease-United States, 1990–2005. COPD 2010; 7:59–62.

6. Xu W, Collet JP, Shapiro S, et al. Negative impacts of unreported COPD exacerbations on health-related qualityof life at 1 year. Eur Respir J 2010; 35:1022–1030.•• Even though dyspnea represents one of the most dysphoric sensations experienced by patients, this study

9/3/15, 12:37 PM


makes the important observation that many patients with COPD do not report acute exacerbations of theirdisease. 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 ofcardiovascular diseases. Eur J Epidemiol 2010; 25:253–260.

8. Almagro P, Lopez Garcia F, Cabrera F, et al. Comorbidity and gender-related differences in patients hospitalizedfor COPD. The ECCO study. Respir Med 2010; 104:253–259.

9. Abernethy AP, Uronis HE, Wheeler JL, Currow DC. Management of dyspnea in patients with chronic obstructivepulmonary disease. Wien Med Wochenshr 2009; 159:583–590.

10. McCormick JR. Pulmonary rehabilitation and palliative care. Semin Respir Crit Care Med 2009; 30:684–699.•• Although our research group proposed 20 years ago that pulmonary rehabilitation represented an idealresource for introducing patients with COPD to ACP discussions, most programs do not focus on advanceplanning. This commentary presents a solid rationale for integrating ACP into pulmonary rehabilitation andshould help to encourage more communication between pulmonary rehabilitation clinicians and palliative carepractitioners.

11. Varkey B. Opioids for palliation of refractory dyspnea in chronic obstructive pulmonary disease patients. CurrOpin Pulm Med 2010; 16:150–154.• This article is an excellent resource for clinicians whose patients have transitioned from manageable torefractory dyspnea. Often physicians become frustrated with the challenges of caring for such patients; thisresource helps integrate diseasedirected and palliative care.

12. Spence A, Hasson F, Waldron M, et al. Professionals delivering palliative care to people with COPD: qualitativestudy. Palliat Med 2009; 23:126–131.•• Assessing physicians' attitudes regarding ACP discussions for identifying barriers and facilitators representsan important line of research. This study determined that physicians felt ill prepared to engage in thesediscussions and also had poor understanding of available palliative care resources. Clearly assistance isneeded 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; 23:642–648.•• This study not only identified multiple barriers to ACP from the patient perspective but also established animportant concept in COPD palliative care: how do we clarify 'end of life' in the context of the unique diseasetrajectory of COPD? Patients with COPD expressed confusion regarding the end-of-life term, which challengesus 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: patientsconcerns regarding death and dying. Palliat Med 2009; 23:691–697.• It remains humbling that healthcare professionals have fallen short in helping our patients understand thenature of COPD and its prognostic implications. Using semi-structured interview techniques, these investigatorsfound that patients harbor fears about the progression of their disease and want more information, whichprovides data to counter physician misperceptions that initiating ACP discussions with patients will aggravatetheir concerns.

15. Fried TR, Drickamer M. Garnering support for advance care planning. JAMA 2010; 303:269–270.•• The recent public polemic around healthcare reform and ACP (i.e., 'death panels') represents another barrierto gaining reimbursement support for meeting our patients' expressed advance planning needs. Thiscommentary allows us to decipher the underpinnings of this discourse and how to avoid allowing it to misdirect

9/3/15, 12:37 PM


our efforts to promote ACP for our patients.

16. Gelberg J, McIvor RA. Overcoming gaps in the management of chronic obstructive pulmonary disease in olderpatients: new insights. Drugs Aging 2010; 27:367–375.

17. Au DH, Udris EM, Fihn SD, et al. Differences in healthcare utilization at the end of life among patients withchronic obstructive pulmonary disease and patients with lung cancer. Arch Intern Med 2006; 166:326–331.

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 andservices. Respir Med 2004; 98:439–445.

20. Goodridge D, Lawson J, Duggleby W, et al. Healthcare utilization of patients with chronic obstructive pulmonarydisease and lung cancer in the last 12 months of life. Respir Med 2008; 102:885–891.

21. Heffner JE, Fahy B, Hilling L, Barbieri C. Attitudes regarding advance directives among patients in pulmonaryrehabilitation. Am J Respir Crit Care Med 1996; 154:1735–1740.

22. Heffner JE, Fahy B, Hilling L, Barbieri C. Outcomes of advance directive education of pulmonary rehabilitationpatients. Am J Respir Crit Care Med 1997; 155:1055–1059.

23. Partridge MR, Khatri A, Sutton L, et al. Palliative care services for those with chronic lung disease. ChronRespir Dis 2009; 6:13–17.

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; 22:538–540.

25. McNeely PD, Hebert PC, Dales RE, et al. Deciding about mechanical ventilation in end-stage chronicobstructive pulmonary disease: how respirologists perceive their role. CMAJ 1997; 156:177–183.

26. Bastin AJ, Starling L, Ahmed R, et al. High prevalence of undiagnosed and severe chronic obstructivepulmonary disease at first hospital admission with acute exacerbation. Chron Respir Dis 2010 [Epub ahead ofprint].

27. Lanken PN, Terry PB, Delisser HM, et al. An official American Thoracic Society clinical policy statement:palliative care for patients with respiratory diseases and critical illnesses. Am J Respir Crit Care Med 2008;177:912–927.

28. Reinke LF, Engelberg RA, Shannon SE, et al. Transitions regarding palliative and end-of-life care in severechronic obstructive pulmonary disease or advanced cancer: themes identified by patients, families, andclinicians. J Palliat Med 2008; 11:601–609.

29. Han MK, Agusti A, Calverley PM, et al. COPD phenotypes: the future of COPD. Am J Respir Crit Care Med2010 [Epub ahead of print].

30. Thomas JM, O'Leary JR, Fried TR. Understanding their options: determinants of hospice discussion for olderpersons with advanced illness. J Gen Intern Med 2009; 24:923–928.

31. Puhan MA, Garcia-Aymerich J, Frey M, et al. Expansion of the prognostic assessment of patients with chronicobstructive pulmonary disease: the updated BODE index and the ADO index. Lancet 2009; 374:704–711.•• Primary care physicians have begun to apply prognosticating indices for identifying patients with COPD for

9/3/15, 12:37 PM


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 shouldinitiate ACP discussions whenever we have the opportunity.

32. Roche N, Rabbat A, Zureik M, Huchon G. Chronic obstructive pulmonary disease exacerbations in emergencydepartments: predictors of outcome. Curr Opin Pulm Med 2010; 16:112–117.

33. The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients.The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA1995; 274:1591–1598.

34. Roberts CM, Seiger A, Buckingham RJ, Stone RA. Clinician perceived good practice in end-of-life care forpatients with COPD. Palliat Med 2008; 22:855–858.

35. Stapleton RD, Nielsen EL, Engelberg RA, et al. Association of depression and life-sustaining treatmentpreferences in patients with COPD. Chest 2005; 127:328–334.

36. Fried TR, Bradley EH, O'Leary J. Prognosis communication in serious illness: perceptions of older patients,caregivers, and clinicians. J Am Geriatr Soc 2003; 51:1398–1403.

37. Heffner JE. Role of pulmonary rehabilitation in palliative care. Respir Care 2000; 45:1365–1371, discussion1371–1375.

38. Hynninen MJ, Bjerke N, Pallesen S, et al. A randomized controlled trial of cognitive behavioral therapy foranxiety and depression in COPD. Respir Med 2010 [Epub ahead of print].

39. Katz PP, Julian LJ, Omachi TA, et al. The impact of disability on depression among individuals with COPD.Chest 2010; 137:838–845.• Previously, observational studies have reported the high prevalence of depression among patients withCOPD. This study is important because it extends these observations by examining potential causes ofdepression and finding an association between the onset of disabilities and depression symptoms, which mayhelp 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 advancedchronic obstructive pulmonary disease. J Pain Symptom Manage 2009; 38:115–123.

41. Simpson AC, Rocker GM. Advanced chronic obstructive pulmonary disease: impact on informal caregivers. JPalliat Care 2008; 24:49–54.

42. Lindqvist G, Hallberg LR. 'Feelings of guilt due to self-inflicted disease': a grounded theory of suffering fromchronic obstructive pulmonary disease (COPD). J Health Psychol 2010; 15:456–466.

43. Omachi TA, Katz PP, Yelin EH, et al. The COPD Helplessness Index: a new tool to measure factors affectingpatient self-management. Chest 2010; 137:823–830.•• Psychological factors represent important barriers to patients' self-management skills, which have importantimplications regarding their motivation to seek ACP with their physicians. This study applies learnedhelplessness theory to COPD and posits that the unanticipated acute exacerbations of the disease promote asense of helplessness, which can now be measured for individual patients by the COPD Helplessness Indexthey developed.

44. Gysels M, Higginson IJ. Access to services for patients with chronic obstructive pulmonary disease: theinvisibility of breathlessness. J Pain Symptom Manage 2008; 36:451–460.

9/3/15, 12:37 PM


Acknowledgement The author thanks Megan Robertson, Amy Roth, and Peggy Baldwin for reference identification and retrievalassistance.

Curr Opin Pulm Med. 2011;17(2):103-109. © 2011 Lippincott Williams & Wilkins

45. Dodd JW, Getov SV, Jones PW. Cognitive function in COPD. Eur Respir J 2010; 35:913–922.

46. Selecky PA, Eliasson CA, Hall RI, et al. Palliative and end-of-life care for patients with cardiopulmonarydiseases: American College of Chest Physicians position statement. Chest 2005; 128:3599–3610.

47. Sachs S, Weinberg RL. Pulmonary rehabilitation for dyspnea in the palliative-care setting. Curr Opin SupportPalliat Care 2009; 3:112–119.• This concise commentary provides more specific logistical information about how ACP can fit into the otherservices commonly provided in pulmonary rehabilitation programs. The discussion provides a common groundfor 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 thelung 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 intensivecare units: opportunities for improvement. Arch Intern Med 2007; 167:461–467.

51. Hickman SE, Nelson CA, Perrin NA, et al. A comparison of methods to communicate treatment preferences innursing facilities: traditional practices versus the physician orders for life-sustaining treatment program. J AmGeriatr Soc 2010; 58:1241–1248.

52. O'Donnell DE, Hernandez P, Kaplan A, et al. Canadian Thoracic Society recommendations for management ofchronic obstructive pulmonary disease – 2008 update – highlights for primary care. Can Respir J 2008;15(Suppl A):1A–8A.

53. Curtis JR. Palliative and end-of-life care for patients with severe COPD. Eur Respir J 2008; 32:796–803.

54. Fried TR, O'Leary JR. Using the experiences of bereaved caregivers to inform patient- and caregiver-centeredadvance care planning. J Gen Intern Med 2008; 23:1602–1607.

55. Gysels M, Higginson IJ. The experience of breathlessness: the social course of chronic obstructive pulmonarydisease. J Pain Symptom Manage 2010; 39:555–563.

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; 58:844–849.

Papers of particular interest, published within the annual period of review, have been highlighted as:• of special interest•• of outstanding interestAdditional references related to this topic can also be found in the Current World Literature section in this issue(p. 129).

Paliative Care Guideline

Documents

Transcript of Paliative Care Guideline