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Health and Quality of Life Outcomes
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Palliative care provision for patients with chronic obstructive pulmonary disease

Abebaw M Yohannes

  • Correspondence: Abebaw M Yohannes A.Yohannes@mmu.ac.uk

Author Affiliations

Department of Physiotherapy, Manchester Metropolitan University, Elizabeth Gaskell Campus, Hathersage Road, Manchester, M13 0JA, UK


Health and Quality of Life Outcomes 2007, 5:17 doi:10.1186/1477-7525-5-17


The electronic version of this article is the complete one and can be found online at: www.hqlo.com/content/5/1/17


Received:26 February 2007
Accepted:3 April 2007
Published:3 April 2007

© 2007 Yohannes; licensee BioMed Central Ltd.

This is an Open Access article distributed under the terms of the Creative Commons Attribution License (creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract

Chronic obstructive pulmonary disease (COPD) is a major cause of disability, morbidity and mortality in old age. Patients with advanced stage COPD are most likely to be admitted three to four times per year with acute exacerbations of COPD (AECOPD) which are costly to manage. The adverse events of AECOPD are associated with poor quality of life, severe physical disability, loneliness, and depression and anxiety symptoms. Currently there is a lack of palliative care provision for patients with advanced stage COPD compared with cancer patients despite having poor prognosis, intolerable dyspnoea, lower levels of self efficacy, greater disability, poor quality of life and higher levels of anxiety and depression. These symptoms affect patients' quality of life and can be a source of concern for family and carers as most patients are likely to be housebound and may be in need of continuous support and care. Evidence of palliative care provision for cancer patients indicate that it improves quality of life and reduces health care costs. The reasons why COPD patients do not receive palliative care are complex. This partly may relate to prognostic accuracy of patients' survival which poses a challenge for healthcare professionals, including general practitioners for patients with advanced stage COPD, as they are less likely to engage in end-of-life care planning in contrast with terminal disease like cancer. Furthermore there is a lack of resources which constraints for the wider availability of the palliative care programmes in the health care system. Potential barriers may include unwillingness of patients to discuss advance care planning and end-of-life care with their general practitioners, lack of time, increased workload, and fear of uncertainty of the information to provide about the prognosis of the disease and also lack of appropriate tools to guide general practitioners when to refer patients for palliative care. COPD is a chronic incurable disease; those in an advanced stage of the disease pursuing intensive medical treatment may also benefit from the simultaneous holistic care approach of palliative care services, medical services and social services to improve quality of end of life care.

Introduction

Chronic obstructive pulmonary disease (COPD) is a major cause of morbidity and mortality worldwide [1,2]. Studies in the US have reported death rate from COPD doubled in the past two decades while significant decline occurred in deaths rate from other chronic diseases, for example, chronic heart disease and stroke [3,4]. The trends of increasing annual death rate of COPD was also marked by the first time the number of women dying from COPD surpassed men [5] in contrast to demographic changes in the general population. In the same period healthcare utilization was exponentially growing because patients with severe COPD were hospitalized three to four times per year and utilization of intensive care units for patients admitted with acute exacerbations of COPD in developed countries [1,4-6]. In the US in 2005, the National Heart, Lung and Blood Institute reported that the annual direct medical costs for COPD were about $21.8 billion and indirect costs (restricted days, lost workdays, and productivity) estimated at $17 billion respectively [7]. Au and co-workers [8] examined retrospectively patients who died in the previous six-months with advanced stage COPD in comparison with lung cancer patients and their healthcare utilization. They found that patients with COPD had 'twice the odds of being admitted to an intensive care unit and received fewer opiates and benzodiazepine compared with patients with lung cancer'. The total direct medical costs were $4,000 higher for COPD patients compared with lung cancer patients because of the intensive care unit utilization [8]. A recent population survey that investigated the health status of COPD patients in five European countries and US have reported that a significant but minority of European Union patients reported that their 'health status was worse than death' because of significant impairment in physical daily activities, severe dyspnoea, fatigue, pain and psychological morbidity due to anxiety and depressive symptoms [9].

In patents with severe COPD (defined forced expiratory volume in one second, FEV1 < 1 litre), inpatient mortality of 7.4% and 90 day mortality of 15% [10] and one year mortality rate for elderly COPD patients range from 36% [11] to 59% reported in patients admitted to intensive care unit with acute exacerbations of COPD [12], and compare unfavorably for cancer patients 'the 5-year relative survival rate for persons diagnosed with cancer is 62.7%, with variation by cancer site and stage at diagnosis' [13]. This article examines why patients with severe advanced stage COPD do not receive appropriate palliative care simultaneously when receiving active treatment despite presenting with low-self-esteem, poor health status, low levels of physical activity, severe dyspnoea and fatigue compared with cancer patients. These symptoms are often associated with adverse events such as worsened functional impairment, frequent hospitalization, and premature death.

Palliative care

A typical palliative care team may comprise of a physician, mental health and palliative care nurses, auxiliary staff, a pharmacist, bereavement counselor, psychologist, chaplain, social worker and volunteers etc. However because of cost implication and different settings of the palliative care services, the team may comprise some or all members of the team. The purpose is to maximize care, relieve suffering and improve quality of life for the patient and provide support for the family and carers with a team approach. The level of care may vary depending on the availability of staff and the set up of the palliative care programme, for example, inpatient or nursing home. In addition it may rely on the outcome of assessment of the palliative care team which may range from once daily or more to two or three times per week by the appropriate team members and with weekly review by the whole team.

Currently palliative care services are not widely available because of the high demand for care for patients with cancer and chronic progressive diseases which are costly to manage. However, a recent survey data in the US hospitals indicate an encouraging sign that the number of palliative care programs increased from 2000 [n = 632 (15%) of hospitals] to 2003 [n = 1027 (25%) of hospitals] [14].

Palliative care is not synonymous with terminal care and it should be apparent that palliative care approach focuses on symptom management, maintenance of a reasonable quality of life, good communication (patients, family members and physicians), increasing physical activities to maintain independence and practical support of emotional, spiritual and psychosocial support for patients and caregivers [15]. Currently, palliative care is mostly available for cancer patients who benefited from medical care to control physical symptoms of pain, dyspnoea, and emotional and spiritual support, at the end of life care [15]. However, this kind of provision is not widely available for COPD patients. Gore and co-workers [16] investigated the morbidity of end stage COPD in comparison to patients with unresectable non-small lung cancer (NSCLC) [FEV1 < 0.75 litres versus 1.47 litres]. The COPD patients were identified with poor quality of life, severe dyspnoea, and psychological burden of clinically relevant anxiety or depression (90% COPD versus 52% NSCLC). Despite having worse prognosis, the COPD patients received no palliative care compared with NSCLC patients. A recent systematic review [17] that investigated the prevalence of physical symptoms of five chronic progressive diseases (advanced cancer, AIDS, heart disease, renal disease, and COPD) identified common physical symptoms across the five conditions which were pain, breathlessness, and fatigue. In addition, a high prevalence of depression was reported in COPD patients. This indicates that palliative care is relevant for patients with all five chronic conditions. However the holistic aspects of care provision and management may require modification to satisfy individual patient's needs in order to improve quality of life and to support carers and families.

The impact of depression can be profound in influencing patient preferences of choice whether to receive a life sustaining treatment or not in patients with COPD [18]. In an elegant qualitative study, Curtis and colleagues [19] examined the differences in end-of-life care provision from patient perspectives for patients with COPD, Cancer and AIDS. The three groups differed in socio-demographic characteristics, and COPD patients were older compared with the Cancer and AIDS patients. However they have reported similar concern of whether the family physicians are skilled enough in providing end of life care (emotional support, communication and accessibility and continuity of care). The COPD patients further reported the desire for education to know more about the disease process, treatment, and prognosis, what dying might be like and advance care planning which may be a territory for the palliative care team to address.

Why COPD patients do not receive palliative care?

General practitioners and healthcare professionals are challenged by prognostic accuracy of patient survival in patients with severe end-stage of COPD, and they are less likely to engage in end-of-life care planning in contrast with terminal diseases like cancer. This poses a challenge about when to refer patients with advanced stage of COPD for palliative care even though their physical, emotional and psychosocial needs are as severe as or worse than patients with lung cancer [16,20]. Furthermore there is a lack of resources which constraints for the wider availability of the palliative care programmes in the health care system.

Currently there is no research data to persuade health care providers that palliative care provision for advanced stage COPD patients has beneficial effects in terms of reducing the healthcare utilization (for example, hospital readmission) or improving quality of life in this patient group. However, a recent study [21] that investigated in male patients the benefits of palliative care provision (predominantly cancer including cardiovascular, pulmonary and gastrointestinal etc.) compared with the usual care (optimum medical treatment and hospital care provision). Patients that received palliative care were less likely to be admitted to intensive care unit during hospitalization, incur lower inpatient costs per day, and receive better medical care provision compared to the usual care patients. Hence palliative care may help in reducing health care costs and may avoid admission into the intensive care unit for patients with COPD.

Acute exacerbations are common in patients with severe COPD which require on average three-to-four times hospital readmission per year and patients are most likely to present with low self-esteem and suffer from a high level of depressive and anxiety symptoms. Our research group has reported recently that patients with severe acute exacerbation COPD identified at discharge with a co-morbid depression have increased likely hood of (13% more) of dying in the following year compared with non-depressed patients [11]. This observation indicates the lack of holistic palliative care provision for psychological, social support (patient and carers) and spiritual care at the end stage of COPD.

Patients with severe COPD are most likely to be housebound, socially isolated, physically disabled, and lead poor quality of life. They can be a source of concern for family and carers, as some patients are chair-bound, and may be in need of continuous support and care including routine basic daily activities for example, bathing.

Benefits of palliative care for COPD patients

Palliative care for COPD patients will open an opportunity for better communication with patient, family, and physician in order to plan appropriate treatment strategies including advance care planning, and patient preferences with regard to choice of end of life withholding or withdrawing medical treatment and hospice care. For the details of topics and protocol guidelines to enhance patient-doctor-communication and treatment options see reviews [15,33].

The multidisciplinary nature of palliative care provision may encourage COPD patients to play an active role in self-management in order to optimize energy and function. In addition, the psychosocial support and the health care professionals' care and attention may promote confidence to over-come the disproportionate fear dyspnoea on exertion brings may help to engage in routine daily activities.

It will also provide unmet needs of the patients psychological, spiritual, and psychosocial needs in the advance stage of the disease in order to improve patients' quality of life. In addition, the spouse and/or carers are more likely to suffer from anxiety and depressive symptoms providing continuous care during the advance stage of the disease and end of life care without having any periods of respite. Therefore, it will open access to a specialist palliative care team including home nursing services and referral to hospice care.

What are the potential barriers?

Table 1 summarizes some of the potential barriers [22-24] from the patients and the general practitioners perspectives to provide satisfactory care for the patients at the end stage of the disease. It requires a multi-modal approach to tackle the barriers as follows.

Table 1. Potential barriers of discussing the prognosis end-stage of COPD [22-24]

The general practitioners may require further training on communication skills in how to break sensitive information such as the prognosis of the disease and advance care planning [24]. It is also possible that general practitioners may not have adequate time with increased workload to discuss such kind of issues at great-depth. Hence, referring those patients in advance stage of the disease to palliative care team is a worthy endeavor.

Education of the patients and carers about the disease, including the prognostic and advance care planning at the early stage of the disease should be part of the pulmonary rehabilitation program. This may increase patient's awareness and confidence to ask relevant questions at the end-stage of the disease and to have a meaningful conversation with their physicians in order to devise appropriate treatment strategies. In order to achieve these goals further training is required to specialize on palliative care for the pulmonary rehabilitation team and others (for example, advanced practice nurses) that may be involved in patient care to assist the general practitioners.

Assessment

Accurate assessment of the patients' psychological morbidity, physical disability and impaired quality of life, is the first step of towards planning good end of life care. A recent study in our department identified physical disability, poor quality of life and depression as predictors of mortality following the events of acute exacerbations of COPD in a preceding year

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