JOURNAL OF PALLIATIVE MEDICINE Volume 17, Number 11, 2014 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2013.0669

Brief Reports

Outpatient Palliative Care for Chronic Obstructive Pulmonary Disease: A Case Series Clara Schroedl, MD, MS,1 Susan Yount, PhD,2 Eytan Szmuilowicz, MD,3 Sharon R. Rosenberg, MD, MS,1 and Ravi Kalhan, MD, MS1

Abstract

Background: Patients with chronic obstructive pulmonary disease (COPD) have well-documented symptoms that affect quality of life. Professional societies recommend palliative care for such patients, but the optimal way of delivering this care is unknown. Objective: To describe an outpatient palliative medicine program for patients with COPD. Design: Retrospective case series. Setting/Subjects: Thirty-six patients with COPD followed in a United States academic outpatient palliative medicine clinic. Measurements: Descriptive analysis of sociodemographic data, disease severity and comorbidities, treatments, hospitalizations, mortality, topic discussion, and symptom assessment. Results: Thirty-six patients (representing 5% of the total number of patients with COPD seen in a specialty pulmonary clinic) were seen over 11 months and followed for 2 years. Seventy-seven percent of patients were Global Initiative for Chronic Obstructive Lung Disease (GOLD) stage 3–4 and 72% were on oxygen at home. No patients had documented advanced directives at the initial visit but documentation increased to 61% for those who had follow-up appointments. The most commonly documented topics included symptoms (100%), social issues (94%), psychological issues (78%), and advance care planning (75%). Of symptoms assessed, pain was the least prevalent (51.6%), and breathlessness and fatigue were the most prevalent (100%). Symptoms were often undertreated prior to the palliative care appointment. During the 3-year study period, there were 120 hospital admissions (median, 2) and 12 deaths (33%). Conclusions: The patients with COPD seen in the outpatient palliative medicine clinic had many comorbid conditions, severe illness, and significant symptom burden. Many physical and psychological symptoms were untreated prior to the palliative medicine appointment. Whether addressing these symptoms through a palliative medicine intervention affects outcomes in COPD is unknown but represents an important topic for future research.

Introduction

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hronic obstructive pulmonary disease (COPD) is the third leading cause of death in the United States1 and despite maximal therapy, studies suggest that patients have a high symptom burden, impaired functional status, and poor health-related quality of life (HRQOL).2–5 In the last year of life, the majority of patients with COPD are breathless, fatigued, in pain, and with depressed mood6; a similar burden is faced by patients with advanced lung cancer.7–9 The American Thoracic Society (ATS) has issued a consensus statement outlining the need for palliative care for

patients with chronic respiratory diseases. However, there is little experience providing outpatient palliative medicine for patients with COPD.10,11 The potential benefits of providing palliative medicine for patients with COPD include improved symptom control, improved HRQOL, and better preparation of advanced directives. Identifying patients with COPD who benefit from palliative care, determining their needs, and measuring the impact of intervention would allow for a better understanding of the role of palliative medicine for patients with COPD and guide future research. Here we present a descriptive study of an outpatient palliative medicine clinic for patients with COPD.

1 Asthma and COPD Program, Division of Pulmonary and Critical Care Medicine, 2Department of Medical Social Sciences, 3Section of Palliative Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois. Accepted April 7, 2014.

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Table 1. Northwestern Pulmonary Palliative Medicine Clinic Program Characteristics

Table 2. Northwestern Pulmonary Palliative Medicine Clinic Patient Characteristics (n = 36)

Total visits 128 Unique new patient visits 36 Number of patients with > 1 visit, n (%) 18 (50%) Median number of follow-up visits (range) 3.5 (1–15) Number of patients with only 1 visit, n (%) 18 (50%) Reason for no follow-up: Appointment no-show 5 (28%) Appointment cancelled 5 (28%) Follow-up not scheduled 8 (44%) Covisit with a COPD provider (initial visit), 25 (69%) n (%) Average duration of initial visit (minutes) 52 Average duration of follow-up visit (minutes) 26

Age (years), median 70 (range, 66–89) Men, n (%) 19 (53%) Women, n (%) 17 (47%) Comorbid conditions, n (%) Lung cancer 7 (19%) Heart disease 17 (47%) Other cancers 8 (22%) Other lung disease 11 (31%) Postbronchodilator FEV1 (L), 0.83 (35%) median (%) GOLD stage, n (%) 1 1 (3%) 2 7 (19%) 3 17 (47%) 4 10 (28%) Unknown 1 (3%) BODE score (n = 27), n (%) 1–3 6 (22%) 4–6 8 (30%) 7–10 13 (48%) COPD Assessment Test (CAT) 24 (7) (n = 22), median (IQR) (score range 0–40) Therapies at the time of the initial visit, n (%) Inhaled corticosteroid 33 (92%) Long-acting beta agonist 34 (94%) Long-acting anticholinergic 28 (78%) Theophylline 3 (8%) Chronic oral steroids 2 (6%) Oxygen 26 (72%) Benzodiazepine 9 (25%) Opiod 9 (25%) Antidepressants 11 (31%) Antipsychotics/Neuroleptics 2 (6%) Antiepileptics 3 (8%) Documented advanced care plan at 0 (0%) the initial appointment, n (%) 11 (31%) Verbally reported advanced care plan, n (%) Documented advanced care plan at 11 (61%) follow-up (n = 18), n (%) Emergency department visits (over the 3-year study period), n (%) 0 8 (22%) 1–3 17 (47%) ‡4 11 (31%) Inpatient admissions (over the 3 year study period), n (%) 0 7 (19%) 1–3 17 (47%) ‡4 12 (33%)

COPD, chronic obstructive pulmonary disease.

Methods Setting, patients, and recruitment

For this retrospective case series, we reviewed the medical records of patients with COPD seen in the Northwestern University Pulmonary Palliative Medicine Clinic from its inception in November 2010 until September 2011. Follow-up data were collected until August 2013. There were no exclusion criteria. The clinic is localized one half day per week in the Northwestern Asthma and COPD Program (serves approximately 690 patients with COPD per year). Patients were seen by one palliative medicine physician (E.S.), often on the same day as an appointment with their COPD physician. Appointments were one-on-one discussions and caregivers were present if available. No formal referral criteria for the palliative medicine clinic existed and referral was left to the discretion of the treating COPD physician. In general, patients with COPD were referred to the palliative medicine clinic if they had a body-mass index, airflow obstruction, dyspnea, and exercise (BODE) index12 of 7 or more, or refractory dyspnea despite maximal medical therapy. This study was approved by the Northwestern University Institutional Review Board and consent was waived. Data collection

All data were collected from the electronic medical record (EMR). Clinical data collected included the following: forced expiratory volume in 1 second (FEV1), Global Initiative for Chronic Obstructive Lung Disease (GOLD) spirometry class, BODE index, COPD Assessment Tool (CAT) score (13), medical comorbidities, and COPD therapies. The initial palliative medicine appointment history and physical and follow-up progress notes were reviewed for content. Additional information collected included the presence or absence of documented advanced directives, topics documented in the medical record as being addressed, symptom presence and therapies received, new treatment initiation, emergency department visits, hospital admissions, and deaths.

FEV1, forced expiratory volume in 1 second; GOLD, Global Initiative for Chronic Obstructive Lung Disease; BODE, body-mass index, airflow obstruction, dyspnea, and exercise; COPD, chronic obstructive pulmonary disease; IQR, interquartile range.

Statistical analysis

Results

Data mean or median values were calculated for demographic and clinical variables and data ranges were reported when appropriate. Physician notes were qualitatively assessed for content.

During the study period, 36 patients (5% of the total COPD pulmonary clinic population) were seen in the palliative medicine clinic (Table 1). Eighteen patients did not have follow-up visits for reasons outlined in Table 1. Patient

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Table 3. Topics Documented in Electronic Medical Records from the Initial Appointment at the Northwestern Pulmonary Palliative Medicine Clinic, n (%)

disturbance, anxiety, fatigue, and breathlessness were each present more than 80% of the time.

Symptoms Psychological issues Social issues Spirituality Advanced care planning Care Coordination Consults/Referrals

To our knowledge, this is the first in-depth characterization of patients with COPD seen in an outpatient palliative medicine clinic. The data from this case series have several important implications. Estimating survival among patients with nonmalignant disease is difficult.10 The mortality among this cohort of patients was 33% at 3 years. All stages of disease were represented, as determined by FEV1, GOLD stage, BODE score, and oxygen dependence. The wide distribution of disease severity underscores the concept that more severe disease does not necessarily equate with more severe symptoms. Twentytwo percent of these patients had mild to moderate disease, yet 100% of patients reported uncontrolled breathlessness. Older persons with advanced COPD, cancer, and heart failure experience multiple moderate or severe symptoms, and patients with COPD experience the greatest number of symptoms overall.14 Patients with COPD characterized by a higher degree of dyspnea, irrespective of their degree of airflow obstruction, have significantly increased mortality.15 The prevalence of comorbidities, especially malignancy and heart disease, was high in this patient series and may impact patient’s perceived symptoms. In our study, there was a high prevalence of symptoms prior to the palliative medicine appointment and many of these symptoms had not been adequately addressed.

36 28 34 9 27 12 3

(100%) (78%) (94%) (25%) (75%) (33%) (8%)

characteristics are presented in Table 2 and are notable for multiple medical comorbidities, and severe COPD. Most were prescribed standard medical therapy and 72% were using oxygen at home. Advanced care planning, emergency department visits, and hospital admissions are also presented in Table 2. There were a total of 12 deaths (33%). The topics addressed at the initial palliative medicine appointment are presented in Table 3. Symptoms were addressed at 100% of the appointments but other topics were addressed less uniformly. The frequency of common symptoms and new treatment initiation are shown in Figure 1. Breathlessness and pain were the most frequently assessed symptoms (97.2% and 86.1%, respectively.) Fatigue and anxiety were the least frequently assessed symptoms (36.1% and 41.7%, respectively.) When evaluated, depression, sleep

FIG. 1.

Discussion

Patient-reported symptoms and treatment.

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Table 4. Proposed Components of an Outpatient Palliative Medicine Intervention for Patients with COPD 1. Standardized referral criteria11,23 2. Standardized symptoms assessment and documentation of disease severity, therapies, and medical comorbidities6,24,25 3. Interventions: A. Optimization of COPD management (including prescription of home oxygen, pulmonary rehabilitation)26 B. Prescription of antidepressants and anxiolytics11,27,28 C. Prescription of opiods29,30 D. Consideration of cognitive-behavioral therapy E. Provision of home services F. Advance care planning and end of life preparation11,27,31–37 G. Spiritual care H. Provision of family support25,38,39 4. Evaluation of program outcomes (e.g., determination of impact on patient reported outcomes and health care utilization) 5. Rigorous study of the above interventions COPD, chronic obstructive pulmonary disease.

New treatments were initiated for many of the patients at their initial palliative medicine appointment, supporting the idea that there is a potential role for palliative medicine consultation in this patient population. However, despite patient report of uncontrolled symptoms, and under treatment of symptoms prior to the palliative care appointment, many patients did not have new treatments initiated. This could be due to a number of factors including physician hesitance to initiate new pharmacotherapy at the initial encounter, patient reluctance to start new treatments with potential for significant side effects, perceived lack of benefit of available therapies, or unfamiliarity with nonpharmacotherapy treatment options. In this study, we did not assess if the initiation of new treatments had an effect on symptoms or outcomes. At the time of their initial visit, the majority of patients were receiving guideline-recommended maximal medical therapy for their COPD. However, many fewer patients were receiving treatment for their anxiety, depression, fatigue, and sleep disturbance. Anxiety and depression are well-recognized comorbidities of patients with COPD and impact prognosis.16–18 When specifically asked, more than 80% of patients reported symptoms of both anxiety and depression. Approximately half were receiving pharmacotherapy at the time of the initial palliative medicine appointment, and an additional third had new treatment initiated. Early palliative medicine intervention provided to patients with metastatic lung cancer significantly improved depression scores.19 It remains to be seen if palliative medicine for patients with COPD can have similar effects. There was significant variability in health care utilization (emergency department visits and hospitalizations) by this series of patients but there were several heavy users of health care resources. Thirty-one percent of patients had four or more emergency department visits and 33% had fouy or more admissions. Because this was an observational retrospective study, it was not possible to determine the impact of the palliative medicine clinic on emergency department visits and hospitalizations. One U.S. prospective randomized con-

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trolled trial of palliative care services for seriously chronically ill patients with either COPD or congestive heart failure failed to find a difference in emergency department utilization after the implementation of palliative care services. However, they did find that compared to controls, patients receiving palliative care had better outcomes on selfmanagement of illness, legal preparation for end-of-life, lower symptom distress, better physical functioning, and higher self-rated health.20 Strategies to decrease health care utilization and readmission rates are important, especially considering plans for reduced Medicare reimbursement for COPD readmissions. There are several limitations to this study. The small, retrospective design limits the generalizability of the results and may have underestimated the extent of the issues discussed if the documentation of these conversations was incomplete. Additionally, use of a validated symptom assessment tool, such as the Edmonton Symptom Assessment System (ESAS)21 would help standardize the assessment of symptoms. Importantly, the referral rate to the palliative medicine clinic among COPD providers was low at 5%. This can be explained by a number of potential factors including lack of familiarity with the program since it was newly established, poor understanding of which patients would benefit from palliative services, and possibly lack of interest or acceptance from a patient perspective. These factors deserve further study. Additionally, only 50% of patients had a follow-up appointment in the palliative medicine clinic. We do not have data to support reasons for the high drop-out rate but hypothesize the following may have contributed: death, hospitalization at the time of follow-up appointment, enrollment in hospice, ‘‘too sick,’’ dissatisfaction with care, or insufficient follow-up interval before study completion. Finally, there were too few patients and too short of follow-up to draw conclusions about the clinical and health care utilization impact of incorporating palliative medicine into the management of COPD. The optimal design of an outpatient palliative medicine clinic for patients with COPD is yet to be determined since there is little evidence supporting the beneficial role for palliative medicine for these patients. Based on our results from this case series, as well as review of the medical literature, we provide recommendations for the design and future application of a palliative medicine clinic for patients with COPD (Table 4). Additionally, we are conducting a qualitative study to assess the unmet health care needs among these patients.22 In summary, patients with COPD seen in an outpatient palliative medicine clinic had many comorbid conditions, a high severity of illness, and significant symptom burden. Many physical and psychological symptoms were newly addressed at the time of the appointment. An important goal of future research will be to evaluate whether addressing symptoms and other health care needs through a palliative medicine intervention affects outcomes in people with COPD. Acknowledgments

Clara Schroedl, Eytan Szmuilowicz, Sharon Rosenberg, and Susan Yount have no conflicts of interest to disclose. Ravi Kalhan has served as a consultant to Forest Laboratories, Elevation Pharmaceuticals, and Boehringer-Ingelheim. His institution has received grants to support his research from

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Boehringer-Ingelheim and GlaxoSmithKline. He has received lecture fees from Merck and Forest Laboratories. This study was supported by NIH 5T32HL076139-08. There was no pharmaceutical company funding.

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Author Disclosure Statement

No competing financial interests exist.

16.

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Address correspondence to: Clara Schroedl, MD, MS Division of Pulmonary and Critical Care Medicine McGaw Medical Center of Northwestern University 240 E. Huron Street, McGaw Pavilion M-300 Chicago, IL 60611 E-mail: [email protected]

Outpatient palliative care for chronic obstructive pulmonary disease: a case series.

Patients with chronic obstructive pulmonary disease (COPD) have well-documented symptoms that affect quality of life. Professional societies recommend...
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