Integrating Palliative Care in Severe Chronic Obstructive Lung Disease

Abstract

Palliative care services for patients with chronic obstructive pulmonary disease (COPD) have been limited in most health care schemes despite the significant impact its symptoms can have on quality of life (QOL). Palliative care must be integrated to address physical and emotional distress and QOL deterioration more effectively. Multi-factorial barriers in current health care systems impede the provision of palliative care, including the lack of familiarity among health care professionals. There are sparse evidence-based studies and guidelines for clinicians to better recognize the need for palliative care in COPD patients compared to the large experience and resources available to cancer patients and hospice care. The multidisciplinary approach of palliative care should help COPD patients navigate through the continuum of chronic disease management. Highest QOL, not necessarily the highest physiologic goals, with relief of physical and emotional suffering, are most important to patients. Hospice care, the last phase of palliative care, can be offered to COPD patients when their goal of care has changed from life-prolonging therapies to comfort treatment. We suggest a scheme for identifying COPD patients for palliative care and for delivering simultaneous disease-directed care to help patients live life to the fullest. Pulmonary rehabilitation offers the best venue for incorporating palliative care. We review the need for, barriers to, and key activities for integrating palliative care into the current health care management of patients living with COPD.

Key words: :

• COPD
• Palliative Care
• Pulmonary Rehabilitation
• End-of-life

INTRODUCTION

The chronic obstructive pulmonary disease (COPD) patient population is increasing worldwide, including 24 million American adults. Nearly 124,000 Americans died from COPD in 2004, and 200,000 to 300,000 die each year in Europe ([1]). The prevalence and mortality rate continue to rise, and in the United States (US) the number of deaths in women has now exceeded men since 2000 ([2], [3]). By 2020, COPD is likely to account for over 6 million annual deaths worldwide, which will make it the third leading cause of death ([2], [4], [5]). COPD is the seventh leading cause of disability ([3]). Diagnosis of COPD is often delayed because patients may not perceive dyspnea until approximately 40% of their lung function is lost ([5]). Current medical and surgical treatments, other than oxygen therapy, have not altered mortality and are limited to symptom treatment, illustrating the need for early attention to palliative care in the management of COPD ([5]).

Palliative care is broadly defined by the World Health Organization (WHO) as an approach to and philosophy of health care that specializes in the relief of the pain, symptoms, and stress of serious illness ([6]). The focus of palliative care is neither to prolong life nor hasten death but rather to improve quality of life (QOL) for patients and their families through symptom management. Three cardinal principles are fostering communication (with and between patients, families, and health care providers), promoting physical activities to maintain independence, and practical support for emotional, psychosocial, and spiritual well-being ([6], [8]). Palliative care customizes treatment to meet the needs of each individual through a multidisciplinary team approach.

Palliative care is not synonymous with hospice care. Hospice care always provides palliative care, but it focuses only on the terminal phase of illness when patients no longer seek curative treatment and their survival is projected to be 6 months or less ([9]). In contrast, palliative care can be provided at any time during a person's illness, even from the time of diagnosis, in any environment, and may be provided simultaneously with curative treatment, creating an integrated disease-directed approach. Its benefits are not limited to the last days of life.

Although palliative care has been the purpose and strength of hospice, all professionals who care for chronically or seriously ill patients should provide or arrange for such care before hospice is necessary. Because pain and symptom management are critical components of patient care, the Accreditation Council of Graduate Medical Education (ACGME) mandates physician education in this area. Palliative Medicine is now recognized as an independent medical sub-specialty ([10]). Both the American College of Chest Physicians (ACCP) and American Thoracic Society (ATS) promote palliative care as an integral part in the management of patients afflicted with any chronic lung ailment ([11], [12]).

In 1982, hospice programs were recognized by Medicare to provide services for patients dying from cancer ([9]). Over the past decade, the number of programs in the US has doubled, with over 1.2 million patients receiving hospice care in 2005 ([12]). Today the patient population referred for hospice services is no longer limited to cancer. Fifty-four percent of admissions are non-cancer patients with heart disease (12%), dementia (9.8%), debility or failure to thrive (9.2%), or lung disease (7.5%), highlighting an increased awareness of palliative care in all populations ([12]). Four out of five hospice patients are ≥ 65 years and 33% are older than 85 years, reflecting the growing population of elderly with chronic disease in need of additional support services ([12]).

Obstacles to providing early palliative care are multi-factorial. Patients with COPD are very heterogeneous in their disease manifestations and trajectory toward death, which makes predicting prognosis difficult. Palliative care services fit poorly with Medicare and other reimbursement policies for hospice services. Some misconstrue that palliative care is merely equivalent to end-of-life care. Only when palliative care is integrated throughout the continuum of chronic disease management with a focus on patient-centered goals will the highest QOL and relief of suffering be realized. We review the need for palliative care, discuss barriers to the provision of palliative care with key activities for overcoming these barriers, and suggest an alternative avenue for integrating palliative care into the current health care management of patients living with COPD through pulmonary rehabilitation.

NEED FOR PALLIATIVE CARE IN COPD

Patients with severe COPD (WHO-NIH GOLD Stages III and IV; Table 1) experience significant morbidity, disability, and increased health care resource utilization ([5]). Similar to cancer patients, COPD patients experience the same symptom burdens and decreased QOL through physical, psychological, spiritual, and social impairments ([13], [14], [15], [16]). Therapeutic interventions with bronchodilators, inhaled corticosteroids, pulmonary rehabilitation, and even lung volume reduction surgery and transplantation can reduce symptoms but have not significantly improved the average duration of survival ([5]). Additionally, health care providers and policies and practices in hospitals and clinics inadequately address patient-centered goals, including discussion of (and respect for) patient wishes for care when neither cure nor extended life can be expected ([17], [18]). Integrating palliative care services with disease-directed therapy may benefit patients with severe COPD before invasive interventions, such as mechanical ventilation and tracheostomy, confine them to long-term care facilities or prolonged hospitalization, where their QOL may deteriorate further.

Table 1 GOLD staging criteria

Stage	Characteristics
I: Mild COPD	FEV1/FVC < 70%
	FEV1 ≥ 80% predicted
II: Moderate COPD	FEV1/FVC < 70%
	50% ≤ FEV1 < 80% predicted
III: Severe COPD	FEV1/FVC < 70%
	30% ≤ FEV1 < 50% predicted
IV: Very Severe COPD	FEV1/FVC < 70%
	FEV1 < 30% predicted or
	FEV1 < 50% predicted plus
	chronic respiratory failure

FEV₁ = forced expiratory volume in 1 second.

FVC = forced vital capacity.

Respiratory failure: arterial partial pressure of oxygen (PaO₂) less than 8.0 kPa (60 mm Hg) with or without arterial partial pressure of CO₂ (PaCO₂) greater than 6.7 kPa (50 mm Hg) while breathing air at sea level. (accessed September 2007: www.goldcopd.com).

Compared to patients with lung cancer, patients with severe COPD receive less palliative care despite having the same symptoms of dyspnea, depression, anxiety, pain, difficulty sleeping, nutritional problems, weight loss, social isolation, and functional disability ([15], [16], [19], [20], [21]). Less than 50% of COPD patients experience relief from dyspnea during their last 6 months of life ([16]). Dyspnea and fatigue cause social isolation, difficulty performing routine activities of daily living (ADL), and impair sexual function.

Pain, a symptom not commonly thought of in patients with COPD, is nearly as prevalent as in patients with lung cancer (21% vs. 28%, respectively) ([22]). Pain is often under-treated in severe COPD patients due to the misperception that opioids and sedatives may hasten death ([23]). Anxiety, depression, and pain are interdependent, exacerbated by each other. All three are present in up to 90% of COPD patients ([13], [14], [15], [16], [24]). Anxiety and depression contribute to decreased QOL independent of COPD severity, and depression is linked to increased mortality, hospital readmission, and longer length of stays ([24]).

Poor appetite and inadequate nutrition in severe COPD patients are secondary to depression, dyspnea (increased work of breathing), and fatigue, which can result in weight loss and muscle wasting. Muscle mass is particularly important in maintaining exercise tolerance. Low body mass index and loss of muscle mass compounds fatigue and decreases the ability to perform activities of daily living (ADL), further reducing independence and QOL ([25], [26]).

Severe COPD often results in multiple hospital admissions during the last year of life to treat acute exacerbations. Hospital admission for an acute exacerbation of severe COPD portends a 2-year survival of 49% ([27]). From 1979 to 2001, 9.5% of all hospitalizations in adults were related to COPD ([28]). Hospitalization rates have increased for all COPD age groups. Those older than 65 years experienced a 62% increase in hospital admissions in the past decade ([3]). Improved health care in developed countries has enabled a longer life span but resulted in more elderly living with chronic, progressive, and disabling illnesses ([29]). Repeated exacerbations of severe COPD not only indicate a poor prognosis, they identify patients who require intensification of existing medical interventions with coordinated palliative care. The physical discomfort often associated with illness or therapy combined with emotional distress is the essence of suffering and rationalizes the use of palliative care throughout their illness. This is often best addressed in between exacerbations.

Consider the difference between the treatment of COPD and lung cancer. Despite similar preferences for comfort-based care, significantly more COPD patients than lung cancer patients receive mechanical ventilation (70% and 19.8%, respectively), tube feeding (38.7% and 18.5%, respectively), and cardiopulmonary resuscitation (25% and 7.8%, respectively) ([24], [27], [30]). While COPD patients have better short-term response to mechanical ventilation and longer survival time (23.9 months vs. 3.3 months) after hospital discharge compared with lung cancer patients, they have more ADL dependencies, worse cardiopulmonary reserve, and decreased QOL ([21], [22], [25], [29], [31]). Other studies show that COPD patients admitted to the ICU with respiratory failure are 3.5 times more likely to die on mechanical ventilation than cancer patients but receive fewer narcotics and anxiolytic medications ([19]). Collectively, these studies emphasize the need for palliative care in patients with the all stages of COPD.

Patients with COPD express a need for better communication with their doctors, more emotional support, quicker access to and continuity in care throughout the lifetime of their illness ([31]). In addition, 25% of families of COPD patients suffer from some personal loss due to the demands of caregiving, such as job or economic strain ([21], [22]). Palliative care can fill these needs and focus on providing an individualized, multi-disciplinary approach to meet the needs of COPD patients and their families. Until recently palliative care services have been underutilitized in patients with severe COPD ([8], [17], [31]).

End-of-life care is the terminal phase of palliative care that is often provided through hospice. Patients, families, and health care providers agree that such care should be supportive in nature, non-invasive, and provided in the patient's preferred setting, usually in-home. However, there is a large disparity between the actual place of death, and type of care received, and what is preferred by the patient ([27]). Over 50% of Americans die in acute care hospitals, and 90% of Medicare beneficiaries are hospitalized during the year prior to death ([32], [33]). The National Center for Health Statistics reveals that 35% of cancer patients die at home compared to 23% of congestive heart failure (CHF) patients and only 15.8% of COPD patients ([29], [34]).

Although the hospice benefit is available to any Medicare recipient, only 23% actually received hospice services before death in 2000 ([35]). Since 2000, the number of patients receiving hospice services has increased by 67%, with non-cancer patients constituting 54% of enrollment. The most rapidly rising non-cancer diagnoses are Alzheimer's disease, failure to thrive, and senile dementia, which all inceased greater than 100% from 2000 to 2005. However, referral of COPD patients for hospice services has increased only minimally, from 4.3% in 2000 to 7.9% in 2005 ([8], [35], [36]).

Enrollment in hospice is often very delayed or even forgotten as a health care option in COPD patients ([37], [38]). Data show that the median survival time for all hospice patients, including those with COPD, was only 36 days ([37]); half of these patients were hospitalized within the 30 days prior to hospice enrollment. Because COPD is predicted to become the third leading cause of death by 2020 ([1], [2]), the number of patients who could benefit from hospice and other palliative services can be expected to increase dramatically. The challenge is to create health care systems and resources to meet the projected need in COPD, a demanding task given the barriers discussed below.

Awareness of palliative care and referral options must increase among health care providers and patients with severe COPD to increase the likelihood that COPD patients will receive appropriate and timely palliative care.

BARRIERS TO PALLIATIVE CARE

Timely and effective palliative care depends on several factors related to the patient and family, health care provider, and health care system. Specific obstacles to effective palliative care include misperception of palliative care, difficulty determining disease prognosis and accurate prediction of short-term mortality, impaired patient-physician communication, outdated health care financing policies, and lack of practice guidelines for the delivery and evaluation of palliative care (Table 2).

Table 2 Barriers to palliative care

A. Patient-and Family-Related

1. Reluctance to discuss prognosis and end-of-life care

2. Lack of trust in health care providers

3. Lack of knowledge regarding disease and progression

4. Lack of knowledge of services available

B. Physician-Related

1. Poor communication with patients

a. Uncomfortable with end-of-life discussions

b. Lack of time for discussions

c. Fear of causing patient to give up hope

d. Variability in COPD disease course trajectory

2. Lack of knowledge of health care finances

3. Lack of knowledge of palliative care philosophy

C. Health-System Related

1. Inadequate resources and facilities

2. Lack of national health policy

a. Lack of Medicare reimbursement for outpatient

b. Lack of Medicare reimbursement for rehab

3. Lack of comprehensive clinical tool for assessment of QOL with disease

4. Cost of multi-disciplinary care

5. Provider of palliative care in COPD

Misperception of palliative care

Patients and providers are often unaware of the definition of palliative care, when and how it can be provided, and what benefits are entitled through it. Palliative care has changed since its inception to aide the dying cancer patient. The updated WHO definition makes an important clarification in that palliative care “is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications” ([6], [8]).

Many health care professionals, patients, and family members unfortunately view palliative care as synonymous with end-of-life care, when hope is gone and “nothing more” can be done ([6]). However, much more can be done both at the end of life and definitely before the need for hospice is evident to everyone. Traditionally, medicine has taken a dichotomous, mutually exclusive approach: either cure disease with the goal to prolong life or relieve suffering and provide comfort care. The latter only took place when life-sustaining efforts become ineffective and death was imminent ([39]). Curative therapy is provided and funded through routine Medicare, whereas comfort care is provided by Medicare's Hospice Benefit when survival is predicted to be less than 6 months ([9]). The 6-month criterion, based upon “the natural course of the illness” ([9]), is clearly controversial given the unpredictable course of chronic disease(s) in individual patients. There is no clear timeline of distinction between end-of-life and the beginning of suffering from chronic disease.

Palliative care is a multidisciplinary approach to treating the whole patient, not just the disease, its exacerbations, and complications. Palliative care can accompany and progressively increase throughout the entire illness and includes appropriate life-prolonging therapies, alleviation of symptoms, rehabilitation, and psychosocial support for both patient and caregiver. It can provide continuity and coordination of care across the continuum of illness and health care sites ([6], [8], [32]). Effective palliative care maintains hope by helping patients and families define new goals, such as maintaining independent living in the home environment with supportive services for ADL's, medication therapy to alleviate dyspnea, exercise for muscle strengthening, and assistance with psychological or spiritual issues ([8], [39], [40]).

Patients with severe COPD receive and perceive better care for an acute exacerbation than for routine ongoing outpatient management ([41]). Palliative care services should be available to COPD patients until prognosis is less than 6 months, when referral to hospice is necessary. Assessment of all health care professionals' perceptions as well as those of patients and caregivers is critical to identify misperceptions and areas for education and change ([42]).

Disease prognosis and prediction of mortality

It is difficult to prognosticate the expected 6-month survival period in COPD due to the variable disease trajectory, with intermittent periods of disease stability interrupted by acute exacerbations ([5], [43]). COPD severity has been based on the degree of airflow obstruction measured by the forced expiratory volume in 1 second (FEV₁) ([5]). However, FEV1 correlates poorly with symptoms ([43]), including dyspnea, the most common and most debilitating symptom for which patients seek medical attention ([43]).

Systemic signs and symptoms, such as muscle wasting (measured by quadriceps cross-sectional area or mid-arm muscle area), poor nutrition, exercise intolerance, and hypoxemia that requires oxygen therapy, not only diminish QOL but also are associated with increased mortality (Table 3) ([43], [44], [45]). Other independent predictors of poor prognosis are co-existing congestive heart failure, depression, recurrent hospitalizations for acute exacerbation (> 2 in prior year), and decreased QOL (measured by the St. George Respiratory Questionnaire) ([44], [45], [46], [47], [48], [49], [50]).

Table 3 Clinical predictors of poor prognosis

1. FEV1 < 30% of predicted

2. Declining performance status, with increasing dependence on others for activities of daily living

3. Uninterrpted walk distance limited to a few steps

4. More than one urgent hospitalization within the past year

5. Left-heart and/or other chronic co-morbid disease

6. Depression/Anxiety

7. BMI < 21kg/m^2

8. Poor QOL per patient

9. Long-term oxygen therapy

10. Intolerable dyspnea

11. BODE Index score >

COPD = chronic obstructive pulmonary disease.

FEV₁ = forced expiratory volume in 1 second.

BMI = body mass index.

QOL = quality of life.

BODE = body mass index, airway bstruction, dyspnea, and exercise performance (Ref. 26).

Research is ongoing to construct a predictive tool for evaluating clinical outcomes in COPD using clinical signs and symptoms and markers of disease pathophysiology, such as the BODE Index ([26]). If physicians could accurately predict the 6-month survival and rapidity of disease progression, they could change their communications and interventions, enabling earlier transition into palliative care and, when indicated, referral to hospice.

Patient-physician communication

Communication is a necessary core competency for the delivery of highest quality palliative care. Barriers to patient-physician communication are twofold: patient-related and physician-related. Physicians must understand their patients' needs and preferences for care. COPD patients and their families are dissatisfied with their physicians' communication regarding end-of-life issues ([17], [31]). Curtis and colleges evaluated patients' perspectives on physician communication skills in end-of-life care in COPD, cancer, and AIDS patients and identified patient education regarding the disease process and its clinical course, treatment, the death and dying process, and advanced care planning as very specific areas that COPD patients felt were lacking in physician communication ([31]). Some patients with severe COPD expressed that they had little understanding of their disease until they participated in pulmonary rehabilitation, where they were informed for the first time that COPD was progressive and irreversible ([31], [51]).

Only 32% of oxygen-dependent COPD patients report discussing advanced care issues and their preferences for end-of-life care with their physician or health care provider. Following better discussions, patients report decreased anxiety and improved satisfaction with care ([18]). Furthermore, 77% of seriously ill hospitalized patients had not previously discussed advanced care issues. Only 20% and 42% of these patients wanted to talk about mechanical ventilation and code status, respectively; upon discussion, 25% revealed they did not want any heroic effort ([52]). Patient characteristics associated with not wanting to discuss these issues were patients' erroneous perception that their prognosis was excellent, not having an advanced directive already in place, and self-reporting fair to excellent QOL. Patients who express a desire to discuss preferences tend to be younger, African-American, and report a poor QOL ([52]). This can have significant impact on those patients who do not want to discuss treatment, as often they also do not want life-extending efforts and are at risk for receiving aggressive but unwanted life-sustaining interventions.

Physicians have expressed that they lack adequate training in palliative care and in communication regarding end-of-life care and patient advanced directives ([39]). Discussing prognosis is avoided by some physicians due to COPD's variable disease trajectory ([17], [18], [31]). The lack of highly accurate prognostication tools also detours physicians from adequately addressing advanced directives until a life-threatening event occurs. Studies show that do-not-resuscitate orders are often not established until several days prior to death ([22], [27]). Physicians hinder communication when they hesitate to discuss prognosis because they feel that “bad news” may take away the patient's will to live. Physicians express reluctance communicating with patients who have difficulty accepting death as well as with patients who are concerned about whether their physician will be there when they are seriously ill or dying ([18]).

Increasing physician familiarity with patient characteristics associated with promoting or inhibiting discussions in end-of-life care can enable physicians to approach individuals about their care more comfortably and identify those patients who may be more reluctant to address sensitive issues. Increasing physicians' awareness and understanding of their own limitations can further identify areas for improvement in communication. This could enable the physician to address more directly the unmet needs, often unspoken but desired, of patients with severe COPD, including discussing early advanced-care planning issues and acknowledging that patient goals may change as their disease advances.

Eligibility criteria and financing

The complexities of health care coverage and restrictive reimbursement policies limit access of patients to certain forms of palliative care. COPD patients receive some components of palliative care such as symptom management to varying degrees, but financing inpatient palliative care consultations and comprehensive services, particularly outside the hospice model, has been a problem. We limit our discussion to an overview of the problems in obtaining palliative care and/or hospice services for patients with COPD due to eligibility criteria and the general cost and reimbursement issues related to Medicare.

Medicare is the principle payor for approximately 80% of hospice care in the United States ([9], [35], [53]). The Center for Medicare and Medicaid Services (CMS) requires certification for hospice eligibility by the hospice medical director and attending physician. The patient must be considered “terminal” (prognosis is ≤ 6 months based on the natural course of disease) and willing to forgo not only curative treatment for the “terminal condition” but Medicare coverage for life-prolonging therapies, and Medicare's clinical guidelines must be met for the specific disease ([9], [35], [53]).

Patients with COPD must have disabling dyspnea at rest, require oxygen, and show disease progression by increased utilization of the emergency room, hospitalization, or physician visits. However, these diagnostic criteria, which were developed with the participation of palliative care specialists, are poor predictors of patients who die within 6 months ([37], [48], [54]). Although the 6 month period can be recertified, many physicians have been reluctant to do this because of concerns regarding Medicare fraud or abuse of services if patients were living longer than the 6 month period ([35], [55]). These criteria likely contribute to the delay in referral for hospice care until physicians are more confident in giving a 6 month prognosis and willing to forego therapies that could increase comfort and QOL but are considered life-extending, such as transfusions, chemotherapy, and various high cost medications.

Hospice services can be provided in any location, including the patient's home, nursing homes, and acute care facilities. Services include skilled nursing care, respite care for family, physician visits, home health aides, nutrition, social services, pharmacy, equipment, spiritual/bereavement services, and any disease-directed therapy that the hospice team feels is palliative. Twenty-four–hour custodial care is not covered. These limitations can result in significant cost to patients and their families as well the burden of trying to provide the needed care by themselves ([39], [56]).

The restrictive eligibility criteria for hospice enrollment were initially created by legislators to limit additional cost to the Medicare program. Overall costs charged to Medicare are six times higher in a person's last year of life ([35]). Although it would seem that hospice care could generate a cost-savings by diverting hospitalization to palliative services at home, data have been inconclusive. The economic analysis is complex and dynamic. There may be cost-savings for an individual patient, but there may be no cost savings if there is an overall increase in use in services.

The cost of hospice has actually soared in the last 5–6 years because more patients are being served and the marked increase in patients with chronic diseases. Medicare is cost-saving or cost-neutral in cancer patients who elect hospice care, but in patients with non-cancer diagnoses, hospice use correlates with approximately 4% higher Medicare spending. This is related to the older ages of non-cancer patients who have a higher prevalence of co-morbidities requiring more intense hospitalization and hospice services and have longer survival periods while in hospice, compared to cancer patients ([57], [58]). Nursing homes with available hospice services compared to those without hospice services show reductions in hospitalizations, hospital length of stay (LOS), use of invasive medical devices (e.g., feeding tubes), and improved management of patient symptoms ([56], [59]). In 2002, the national median and mean LOS for all hospice patients was 16 days and 55 days, respectively, indicating that time in hospice is short but longer stays are becoming common ([35]). However, short survival time can also result in higher costs due to increased intensity of services at enrollment (e.g., equipment costs) and in the last days, without any middle period where costs are less and can be recovered.

Medicare finances “comprehensive” palliative care for terminal illnesses through hospice, where payment is based on an all-inclusive per diem rate with an overall cap on payments to the hospice provider plus a separate percentage cap on inpatient hospital services. Management and treatment of any non-terminal illness-related issues are financed through routine Medicare parts A, B or other insurance ([9]). Palliative services prior to hospice enrollment are not supported by government regulatory policy and create fragmented care.

The all-inclusive per diem rate is problematic for hospice facilities and hospitals due to low reimbursement rates if they are providing care for high-cost patients. The 2007 reimbursement rates by Medicare for hospice services is $130.79/day for home care, $581.82/day for inpatient care, and $135.70/day for inpatient respite care, with a cap of $20,585.39 ([60]). An individual hospice may decide not to accept a patient if the hospice facility determines it does not have the resources to properly care for the patient. Currently, only programs with large numbers of patients, diverse patients, and varying lengths of stays can absorb the expense of high-cost patients. This can potentially create discrimination against those patient populations with high-cost needs ([52]).

Little is known about the impact of palliative care on total health care costs for patients with severe COPD. In 2004, only 9% of total health care dollars expended for patients with COPD was spent on nursing home and home care ([2], [3]). Although there may be increased health care dollar expenditure for hospice care, without it patients will be forced to receive care and die in acute care hospitals or nursing homes. The health care crisis reaches all domains, but home-based palliative interventions seem more appropriate to meet COPD patients' and families' wishes to maintain QOL and ultimately die at home. Even though hospice care may cost more than conventional care, its comprehensive and continuity of services are irreplaceable. Earlier entry into hospice may be a way to reduce overall Medicare cost by providing earlier home interventions that prevent the need for aggressive interventions late in the course of illness, in particular ICU care. Major policy changes are needed to address this aspect of the health-care crisis.

Practice guidelines for the delivery of palliative care

Medical organizations must foster a new philosophy of palliative care to institute a national change in practice. Well-crafted clinical practice guidelines can support such change. American Thoracic Society (ATS) and American College of Chest Physicians (ACCP) guidelines strongly support the WHO definition and declare that palliative care should be an integral part of caring for patients with life-threatening or advanced disease and have delineated components to be considered in providing quality care ([6], [10], [11]). These guidelines are an excellent beginning to increasing pulmonary physicians' awareness of the need for palliative care, but they are limited to patients whom death is imminent.

The GOLD guidelines (www.goldcopd.com) do not include a specific plan for palliative care in chronic management of COPD ([5]). However, they do recommend improving symptom control and QOL through pharmacologic therapy and multidisciplinary pulmonary rehabilitation, including the use of long-term supplemental oxygen for hypoxemia and even non-invasive positive pressure ventilation for acute exacerbation ([5]).

Chronic care and palliative care guidelines for COPD patients should affirm life and focus the coordination and continuity of care over its continuum based on acuity or need, not on time or prognosis. Conceptually, patients should not be asked to arbitrarily choose between disease-directed care and palliative care. A multidisciplinary team approach should be instituted to address the needs of COPD patients and their families in order to help them live as actively as possible. The integration of intensive palliative care at transition points of illness, when psychosocial and family trauma is often the greatest, has the potential to remedy shortfalls in health care quality.

PROVISION OF INTEGRATIVE PALLIATIVE CARE: OVERCOMING THE BARRIERS IN COPD PATIENTS

Criteria for initiating and selecting COPD patients for earlier palliative care need to be established (Table 4). In addition, responsibilities for such care will need to be assigned. Pulmonary physicians and primary care professionals will need education and experience in the general principles and practices of palliative care to apply them to COPD patients. And lastly, physicians will need to understand the current changes in health care legislation and financing that can impact deliver of care.

Table 4 Selection criteria for palliative care severe COPD patients

• GOLD stages II through IV

• ≥ 2/yr hospital admission for COPD exacerbation

• BODE index scores ≥ 5

• ICU admission for respiratory failure

• Home non-invasive positive pressure ventilation

• Supplemental oxygen requirement

• Patients with > 10% in 6 months or BMI < 21kg/m2

• Concomitant CHF

• Patients with transplant or LVRS – pre- or post-

• Lack of home support system

• Presence of anxiety or depression

• Patients expressing poor symptom control

• Patients who are unable to meet their ADLs

BODE = body mass index, airway obstruction, dyspnea, exercise performance (Ref. 26).

ICU = intensive care unit.

CHF = congestive heart failure.

LVRS = lung volume reduction surgery.

ADL = activities of daily living.

Model of simultaneous palliative care: evidence of a successful approach

Palliative care for COPD progresses simultaneously with disease progression. It should ideally begin early, at the time of diagnosis, and continue into the family's bereavement period (Figure 1). The patient's goals of care will dictate the extent to which their care changes over time. Goals include life-prolongation, maintaining functionality and independence, and comfort ([40]). These are not mutually exclusive, but as COPD progresses, the patient's priority for selecting goals changes and requires a shift in integrated care.

Figure 1 Integrated palliative care for COPD patients and families. Adapted from Ref. ([32]).

A simultaneous palliative care approach combined with disease-directed therapy has been successfully applied in other patient populations, including patients awaiting liver transplantation and cancer patients receiving investigational chemotherapy ([61], [62], [63]). A prospective cohort study evaluated simultaneous palliative care while providing disease-directed chemotherapy in patients with advanced cancer and found that QOL was maintained and quality of care was equal to or better than conventional treatment ([63]).

A comparison study of cancer, COPD, and congestive heart failure (CHF) patients with less than 1 year prognosis were evaluated for satisfaction in care after receiving either usual medical care or progressive home-based interdisciplinary palliative care and found that both the patient and care-giver were significantly more satisfied with and had better symptom management with the progressive program. ([64]). The palliative, patient-centered approach was modeled from hospice, but did not eliminate curative therapies or require the 6-month prognosis criterion for entry. This study showed that patients in the palliative care program were 8 times more likely to die at home, with the greatest impact on COPD patients. Ninety-two percent of COPD patients in the palliative program died at home compared with only 37% who received usual care, whereas 87% of cancer patients in the palliative program and 71% who received usual care died at home. In patients with CHF, 87% who received the palliative program and 47% who received usual care died at home. This progressive approach seems to work well for COPD because it allows for variability in symptom progression and adapts interventions according with the focus to maintain or improve QOL and quality of care based on patient-centered and patient-directed goals ([65]).

Physician education

The Education of Palliative and End-of-Life Care (EPEC) project has developed general communication guidelines, which are accessible online (www.epec.net), for establishing patient goals of care, delivering bad news, and withdrawing and withholding care ([39], [66]). Evidence shows that better communication improves patient satisfaction and is enhanced when physicians change from physician-centered interviews to patient-centered discussions, use open-ended questions, and provide eye contact ([39], [66]). Empirical data are needed to establish if specific communication guidelines will improve COPD patient outcomes. An EPEC model for COPD is needed.

Opportunities for training in palliative care do exist. Palliative medicine is now recognized by the American Board of Medical Specialties as an independent sub-specialty with additional fellowship training required for board certification ([67]). Heightened awareness through mandatory education and training in pain management and end-of-life care by the ACGME for all physicians will bring the frontier of palliative medicine to all patients with debilitating diseases ([10]). The palliative medicine sub-specialists can serve as role models, educators, and consultants to pulmonary physicians to bring palliative care to COPD patients. Additional education resources include continuing medical education courses, case-study evaluation, problem-based learning, conferences, and journal clubs. The National Hospice and Palliative Care Organization provides web-based educational conferences and seminars (www.nhcpo.org) in all aspects of palliative care ([8]). Web-based educational standards are available from the American Board of Hospice and Palliative Medicine (www.abhpm.org) to guide content important in palliative care practice ([67]).

The major domains of knowledge and skills covered by palliative medicine training are presented in Table 5; the curriculum objectives are included in Appendix 1. Designated pulmonary physicians with a chosen niche for QOL research and care will be needed to champion other health-care providers in pulmonary medicine and provide consultation to integrate palliative principles of care into conventional practice in the management of COPD. University hospitals and practitioners are key to implementing this change as their missions are to educate, create innovative practices to improve health care, and disseminate those changes to the community.

Table 5 Domains of palliative care curriculum

The major domains of knowledge and skills covered by palliative medicine for patients with severe COPD:

• Communication with patients and families, including conveying bad news and discussing goals and preferences

• Ethics and decision making

• Legal and financial issues

• Symptom assessment and management Assessing and improving quality of life and functioning

• Identifying and managing medical co-morbidities and complications

• Psychosocial and spiritual support

• Death and dying

• Bereavement support for the family

• Hospice and palliative approaches to care

• Interdisciplinary team work

Adapted from Ref. ([13]).

Providing palliative care: Sharpened prognostication

We recommend palliative care be available to any COPD patient with emotional or physical distress, with poor prognostic characteristics, or who requires pulmonary rehabilitation. The selection criteria we propose are detailed in Table 4. Additionally, the BODE Index can be used to help identify patients for palliative care in the clinic and at hospital discharge ([26]). It is a multidimensional numerical scoring system ranging from 0 to 10 points as disease severity increases and includes four variables: body mass index (BMI), airflow obstruction measured by FEV1, dyspnea measured by the Modified Medical Research Council criteria, and exercise tolerance measured by the distance walked in 6 minutes. The BODE Index is a significantly better predictor of mortality than FEV1 alone. Mortality at 52 weeks was 80% for patients with BODE scores > 7 compared to 40% with BODE Index scores of 5 to 6. The BODE index is also a better predictor of hospitalization than FEV1 alone or severity staging using GOLD criteria ([68]). We recommend employing the BODE Index to measure clinical deterioration and guide disease therapy. Research is needed to evaluate whether the BODE Index can better discriminate which patients with severe COPD are more appropriate for hospice.

Providing palliative care: Enhancing services

Palliative services outside of hospice have not been supported by government regulatory policy. One of the most difficult areas in palliative care as described previously is generating clinical revenue for services rendered. The Medicare standards of reimbursement are often adopted by Medicaid and third-party payers for the service or diagnosis and amount of reimbursement that is paid, which has created an incentive for many hospitals to institute some type of palliative service to insure cost containment ([69], [70]).

Although there is a large economic barrier to palliative care outside of hospice, palliative care programs have rapidly increased in the United States and show improved patient satisfaction and economic incentive ([64], [65]). Twenty-five percent of hospitals provide some type of palliative service, which may include inpatient units, consultative services to inpatients and ICU patients, emergency departments, nursing homes, and patients' homes ([59], [71], [72]). Palliative care programs and services vary in their source of funding and include grant funds for research activities, private sector donations, and volunteer faculty and workers, but over 50% of monies come directly from hospitals ([73]).

Hospital palliative care programs demonstrate improvement in patient symptoms and patient and caregiver satisfaction and showed lower rates of in-hospital death, decreased hospital LOS, and reduced direct and indirect costs ([64], [74], [75]). Daily cost was reduced by 59% for patients who died in inpatient palliative care units versus outside the unit ([75]).

Progressive home-based (non-hospice–related) palliative programs also showed a decrease in hospital days, fewer emergency department visits, and improved cost savings in patients with COPD, CHF, and cancer of 67%, 52%, and 35%, respectively, compared to patients who received usual care ([64], [65]).

The pulmonary physician must understand health care economics in order to increase palliative services through hospice and outside the Medicare benefit. Specific billing codes for palliative care are currently underutilized. Understanding billing codes and how to apply them will allow an increase in the provision of palliative services. The most frequently used Current Procedural Terminology (CPT) codes in palliative medicine are the evaluation and management (E/M) codes 99201-99499 ([76]). These codes are then applied to the various settings where the physician sees the patient (office, hospital, home) and the type of encounter (initial or follow-up; attending or consultative role) and based on the length of the encounter. Documentation must reflect that 50% of the interaction with the patient is related to information or counseling. These codes may also be used if more than one physician is caring for the patient, and the key is documenting why the patient is being seen by using an appropriate International Classification of Disease-Clinical Modification (ICD-9-CM) code ([77]). The codes for palliative care are more symptom-based, such as pain, weakness, and dyspnea, while the disease codes, such as COPD, can be used by the primary attending physician.

Current palliative care services are insufficient to meet growing demands, and the responsibility often falls to the primary care provider to coordinate available services ([35], [39]). Physicians express concern over reimbursement-related time pressures in managing patient services, and often patients' needs are not met by routine visits. Palliative care case managers provided by hospitals would decrease the pulmonary physician's burden. Other case managers are provided through Medicare for hospice, through Medicare for home health care for patients with acute care issues, and through managed-care organizations; however, services and eligibility are highly variable ([9]). Non-physician care coordinators, such as nurse practitioners, respiratory therapists, or nurse specialists in palliative care, could oversee long-term management of severe COPD patients in a palliative care program. Registered nurses have traditionally been well-educated in skills of death and dying in a holistic, patient-centered approach ([56]). Generating revenue for palliative care could substantially expand services by subsidizing the allied health professionals needed to implement a palliative care program.

Because health care for patients with chronic diseases through the Medicare system has become so fragmented and inadequate, in particular during the last year of life, Congress passed the Medicare Modernization Act (MMA) in 2003 and established the Chronic Care Improvement Program (CCIP) in 2004 ([35]). Through the CCIP, a randomized controlled study is currently being conducted using various models of care to address fragmentation of care in patients with complicated diabetes, CHF, and COPD with the goal to promote the use of evidence-based treatment guidelines and reduce health care cost and increase quality of care by coordinating care across health care settings and providers, and increase patient education. Palliative care is a major aspect of the CCIP, and a major goal is to coordinate services throughout all settings. Data should be available in the next year and shed light on the best model of care to improve quality and continuity in care for the necessary policy changes.

Providing palliative care in COPD: Pulmonary rehabilitation

We advocate a novel idea for instituting and coordinating palliative care in severe COPD patients through pulmonary rehabilitation. Pulmonary rehabilitation provides a multidisciplinary approach with goals often identical to those of palliative care, with historically more focus on exercise and disease education. Pulmonary rehabilitation is led by a medical director and has nurses or respiratory therapists as educators, trainers, and case managers. Pulmonary rehabilitation is a comprehensive program of individualized exercise, strengthening, pulmonary conditioning, and smoking cessation strategies for symptomatic patients with COPD. Entry criteria to pulmonary rehabilitation are dictated by the presence of symptoms and disability, not the degree of impairment in FEV₁ alone ([78]). The primary goal is to improve QOL by increasing exercise tolerance and optimizing functional status, including symptom control ([79]). Pulmonary rehabilitation improves dyspnea, exercise tolerance, and QOL in most patients. Patients who receive pulmonary rehabilitation demonstrate improved BODE Index scores and decreased mortality at 2 years compared to patients who do not receive pulmonary rehabilitation ([80]).

Pulmonary rehabilitation patients receive extensive education about COPD disease physiology, the role of pharmacotherapy, exercise training, and breathing techniques to improve pulmonary functioning and relieve dyspnea. Education in self-management strategies improves self-efficacy ([81]). The desired outcome is to increase the patient's and family's ability to actively manage the illness, thereby increasing independence and fulfilling their expressed need for information.

Deficits in pulmonary rehabilitation programs include limited evaluation of the psychosocial, behavioral, nutritional, sleep, and spiritual components of patient care. Psychosocial aspects, including depression, anxiety, social support, and family evaluation, in COPD patients are poorly assessed compared to traditional hospice-based palliative care for other diseases such as cancer. Psychosocial support services, pain and other symptom assessment, and coordination with other disease management are usually referred to other departments or the patient's primary doctor and are not included in the pulmonary rehabilitation program creating poor communication and fragmentation of care.

With appropriate guidelines and preparation, however, pulmonary rehabilitation could be the most convenient venue for providing palliative care for severe COPD patients. Pulmonary physicians are well posed to provide palliative care for severe COPD patients. They have the education and expertise in pulmonary-critical care medicine, including rehabilitation and sleep medicine. Critical care routinely necessitates knowledge and practical skills in end-of-life discussions, symptom and disease management, and family care. These valuable experiences enable the pulmonary physician to be comfortable with severe disease and, with additional preparation, could enable the physician to be the pivotal link with palliative care through pulmonary rehabilitation.

Financing for pulmonary rehabilitation can be problematic. “G” codes, which are the codes used to successfully submit billing to Medicare/Medicaid, were instituted in 2002 by CMS for reimbursement of respiratory therapy services used in pulmonary rehabilitation programs ([82]). The initiation of “G” codes required programs to become highly structured in order to be eligible for reimbursement. “G” codes cover three aspects of respiratory care and are time-limited and content-limited: one-on-one (practitioner with patient) therapeutic procedures to improve respiratory function, one-on-one therapeutic procedures to improve strength or endurance, and group exercises in respiratory strength and function. Despite the overwhelming need and professional society recommendations for federal reimbursement for all services in a comprehensive pulmonary rehabilitation program ([82]), as of 2006 Medicare denied pulmonary rehabilitation as a necessary national benefit.

The American Association of Cardiovascular and Pulmonary Rehabilitation (AACVPR) provides and encourages pulmonary rehabilitation programs to seek certification in the hope that this will influence future Medicare approval and standardization of care (www.aacvpr.org). Currently, there are only 285 certified pulmonary rehabilitation programs in the United States ([78]). Certification requires the respiratory therapy component, but programs must also contain specific didactic sessions on disease and treatment including medications. Additionally, programs make other services available to the patient, including nutrition and psychological evaluation. However, due to the lack of a reimbursement mechanism for all of AACVPR's required components of care, it is difficult for programs to remain solvent. Since there is not any national coverage determination for pulmonary rehabilitation programs by Medicare, “G” code reimbursement is the only source of payment and it is not a per diem-based service. This can create out-of-pocket expenses for patients, many of whom cannot afford it ([82]).

We recommend that pulmonary rehabilitation programs expand their care focus to more systematically integrate palliative care services (Figure 2). The skills of multidisciplinary teams of palliative care and pulmonary rehabilitation would be complementary, providing patients with more comprehensive and coordinated care. The palliative care professionals would serve as consultants and providers of various specialized patient-centered services. Since the MMA, (2003) hospice physicians are able to see any patient for consultation and bill Medicare separately ([35]). The palliative care sub-specialist could see patients with severe COPD and make specific recommendations for care that could be implemented by the palliative care and rehabilitation team. These professionals, such as a social worker, could see patients at the pulmonary rehabilitation site and be able to use palliative care billing codes for their expertise, creating financial support for their services. Components of the combined care program are presented in Table 6 and meet the clinical practice guidelines advocated by the National Consensus Project for Quality Palliative Care ([59]).

Table 6 Components of pulmonary rehabilitation

• Exercise strengthening

• Body composition evaluation

• Disease education

• Smoking cessation

• Self-management/efficiency

• Psychosocial evaluation

° Depression

° Anxiety

° Social support

° Family evaluation

° Sexuality

• Ethical

° Advance directives—Advance care planning

° End-of-life/spirituality

Figure 2 UC Davis Palliative Care and Pulmonary Rehabilitation Program.

Evaluation of palliative care

Palliative care in COPD and other chronic diseases must be continually evaluated in three interdependent areas: system, process, and outcomes ([83]). System refers to the availability and characteristics of professional and institutional providers and relevant public policies. Process refers to the delivery of services and includes the adherence to guidelines. Outcomes are how care has affected the patient and can include mortality, cost, satisfaction, and QOL. Many tools have been created to measure process and outcomes in health care. In Table 7 (Patient Outcomes and Evaluation), we recommend measurement tools, primarily questionnaires, for each patient outcome. The pulmonary rehabilitation personnel would administer the questionnaires and screening studies upon entry into the program. Follow-up questionnaires would be repeated during the program at variable times depending on services required and their duration. Not only would the information collected contribute to quality improvement processes but (with appropriate patient protections) it would provide a rich resource for research.

Table 7 Patient outcomes and evaluation

Patient Outcomes	Outcome Measurement
Quality of life	St. George Respiratory Questionnaire^1
Exercise performance	BODE Index^2
Control of Pulmonary-related	BODE Index^2 symptoms
Dyspnea
Fatigue
Weight	Mid-thigh circumference
Activities of daily living	Patient diary
Sleep	Pittsburg Sleep Quality Index^3
Depression	Becks Depression Inventory^4
Anxiety	Hospital Anxiety and Depression Scale^5

¹From Ref. ([50]).

²From Ref. ([26]) BODE index = body mass index, airway obstruction, dyspnea, exercise performance.

³From Ref. ([86]).

⁴From Ref. ([85]).

⁵From Ref. ([84]).

CONCLUSION

Evidence and experience demonstrates the need for change in our current health care system, including the need for interdisciplinary collaborations to deliver integrated palliative care with disease-directed therapy for patients with COPD. It must be delivered in a timely manner, adapted to the patient and environment, with the primary goal to prevent suffering and relieve the burdens that life-threatening illness imposes on patients and families. Palliative care should begin early in COPD with a progressive implementation of palliative services as clinical status deteriorates and advanced therapeutic measures become ineffective, inappropriate, or unwanted by the patient.

Overcoming barriers will require a change in medical philosophy, physician education in palliative care principles, and changes in the financing of palliative care. One of the biggest and most difficult barriers is to eliminate projected life expectancy as the criterion for eligibility for palliative services. Access to palliative care and coordination of care across health care facilities has shown improved patient and caregiver satisfaction, communication, and patient-directed goals. The goals of palliative care are consistent with the goals of pulmonary rehabilitation. It is time for pulmonary rehabilitation programs to incorporate palliative care services and provide a comprehensive patient-centered program for patients and families living with COPD. Acceptance of palliative medicine as a new sub-specialty by the American Board of Internal Medicine with defined competencies offers hope for COPD patients, pulmonologists, and palliative care practitioners.

APPENDIX A

Palliative Care Fellowship Curriculum

The curriculum of the program must exhibit, at a minimum, the content and skills are listed below:

1. Epidemiology, natural history, and treatment options for patients with common chronic diseases and life-threatening medical conditions including pediatrics.

2. History of the development of the discipline of palliative medicine.

3. Age-appropriate comprehensive assessment including physical, cognitive, functional, social, psychological, and spiritual domains using history, examination, and appropriate laboratory evaluation. Assessment of suffering and quality of life should be included.

4. The role, function, and development of the interdisciplinary team and its component disciplines in the practice of palliative care.

5. Management of common co-morbidities and complications in patients with life-threatening illness.

6. Management of neuro-psychiatric co-morbidities in patients with life-threatening illnesses.

7. Management of symptoms in palliative care patients including various pharmacologic and non-pharmacologic modalities, and pharmacodynamics of commonly used agents. Symptom management also shall include patient and family education, psychosocial and spiritual support, and appropriate referrals for other modalities such as invasive procedures.

8. Management of palliative care emergencies, e.g., spinal cord compression, suicidal ideation.

9. Management of psychological, social, and spiritual issues of palliative care patients and their families.

10. Ability to assess the functional capability or capacity of the patient.

11. The natural history, phenomenology, and management of grief and bereavement, and the role of the interdisciplinary team in providing support to bereaved family members.

12. Assessment and management of patients in community settings, such as home, long-term care.

13. Care of the dying patient including managing terminal symptoms, patient/family education, bereavement, and organ donation.

14. Economic and regulatory aspects of palliative care including national health policy issues and national financing mechanisms.

15. Ethical and legal aspects of palliative care including but not limited to those pertinent to infants, children, adults and geriatric populations.

16. Cultural aspects of palliative care including issues relating to geographic location (urban vs. rural) ethnicity, and socioeconomic status.

17. Communication skills with patients, families, professional colleagues, and community groups.

18. Ability to function as a consultant and demonstrate insight into one's own limitations that justify referral to another consultant, e.g., neuroradiology, interventional pain medicine.

19. Scholarship including research methodologies enabling interpretation of the medical literature and research methodologies appropriate to end-of-life-care settings and populations.

20. Skills in quality improvement methodologies applicable in end-of-life-care settings.

Taken from Ref. ([54]).

Sir William Osler is attributed the admonition that “It is far more important to treat the patient than the disease.”