QJM Advance Access published online on July 31, 2008
QJM, doi:10.1093/qjmed/hcn087
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Advanced chronic obstructive pulmonary disease: rethinking models of care
From the 1Graduate Studies Department and 2Divisions of Respirology and Palliative Medicine, QEII Health Sciences Centre and Dalhousie University, Halifax, Nova Scotia
Address correspondence to Dr G.M. Rocker, Head, Division of Respirology, #4457 Halifax Infirmary, 1796 Summer St, Halifax B3H 3A7, NS, Canada. email: gmrocker{at}dal.ca
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Summary |
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 Top Summary IntroductionLiving with COPD: psychological...Relational/social effectsRethinking our approach to...ConclusionReferences |
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Chronic obstructive pulmonary disease (COPD) is unique among leading causes of death in western society. Prevalence, associated morbidity and attributable mortality continue to rise. The resultant cost in quality of life to patients, families and to the health care system in general, demands improvements in the prevention and treatment of this common and ultimately debilitating condition. Traditional healthcare approaches to COPD, based on the biomedical model, have focused on the underlying pathophysiology of disease within which patients receive episodic care aimed at treating and preventing acute exacerbations. In contrast, patients living with COPD interpret it from an individually experienced illness perspective impacted by unique contextual factors that influence personal meaning. The psychosocial ramifications that follow the inexorable decline in capacity and independence are powerful forces shaping the experience of patients living with advancing COPD. The dominant role and impact of psychosocial effects on quality of life in advancing COPD require us to rethink our approach to care to more effectively address these more elusive yet chronically troublesome issues.
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Introduction |
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TopSummaryIntroductionLiving with COPD: psychological...Relational/social effectsRethinking our approach to...ConclusionReferences |
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Chronic obstructive pulmonary disease (COPD) will be the third leading cause of death globally by 2020.1 COPD is unique among the leading causes of death in western society given that prevalence, associated morbidity and attributable mortality continue to rise.1–4 Severe exacerbations of COPD that lead to unscheduled visits/admissions to hospital result in the significant economic burden associated with the disease—about $10 billion in the US in 2003.5 This underpins (from a purely economic viewpoint) the need for more effective prevention and management strategies.5 While economic implications are important, the resulting symptom burden of COPD and its attendant suffering mean those living with COPD experience it as an illness with pervasive and far-reaching effects on their quality of life. In this context, meaningful goals of care have less to do with institutional economic concerns and more to do with mitigating the personally relevant illness effects. In contrast, many healthcare providers’ perspective of COPD is one of disease treatment with a focus primarily on biomedical concerns and less attention to psychosocial dynamics or needs beyond those of the acute admission. This difference in perspectives is important as a potential source of mismatch between the care we provide to patients with advanced COPD and care they actually desire/will comply with, i.e. goals more meaningful and acceptable to the patients themselves. This gap in care is common in COPD.6–11 In this review, we provide a breadth of evidence that supports a rethinking of the current care paradigm in favour of a broader, more patient-focused approach that addresses the psychosocial ramifications of COPD. This broader approach has the potential to improve the effectiveness of efforts to relieve the burden that COPD and its exacerbations impose on patients, their informal carers (caregivers) and healthcare systems generally.
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Living with COPD: psychological effects |
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TopSummaryIntroductionLiving with COPD: psychological...Relational/social effectsRethinking our approach to...ConclusionReferences |
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Although pulmonary dysfunction is ultimately the root of COPD-related distress, dyspnea, fatigue and their psychosocial consequences, continue to dominate when patients assess their health-related QoL.10,12–17 Fatigue is poorly understood and believed to have a significant subjective component strongly associated with dyspnea, although the nature of the relationship remains unclear.18 Fatigue has been defined as ‘the multidimensional sensation of tiredness that the individual experiences when perceiving the reduced capacity to function normally’ and it often varies with respect to daily pattern, triggers or contributing factors, and responsiveness to interventions.18 Anxiety, depression and disturbances in sleep patterns are common in COPD,10,12,18–21 they often coexist for COPD patients and may partially explain their fatigue, as in other types of chronic illness.18 The influence of physical limitations and their resulting unpredictability leads to considerable psychological distress in the form of anxiety, panic, strong dependence on rescue bronchodilators and an essential need for planning, pacing and prioritizing behaviours.10 Reciprocally, anxiety and depression compound the physical aspects of respiratory disorders.22,23 Thus, impairments related to energy levels, emotional functioning, sleep and rest, mobility, social interaction, ADLs, recreation, work, finance and satisfaction with life all may find expression to some degree within the psychosocial domain.24–26
Fear is a major emotional consequence of COPD for many patients and their carers. Fear in COPD has been associated with increasing dyspnea, dependency, respiratory crises, as well as with dying and death10,12,16,27 and with a sense of constant threat that severe exacerbations often invoke.22,28–30 Some of the fear arises from a sense of more generalized vulnerability due to increasing dependency, for example latent anxieties about outcomes such as being institutionalized for the rest of one's life and/or ending up on a respirator. Many patients cope with this latent fear by focusing on living a day at a time to make things seem more manageable and less frightening.27
Anxiety, panic disorder and depression are major themes in COPD, yet they tend to be underdiagnosed and undertreated, especially in the context of concurrent physical illness.10,21,25,31 Together they appear to significantly affect functional status over and above medical burden and COPD severity.26 Compared with many chronic illnesses, patients living with COPD tend to report worse psychological functioning and greater psychiatric distress.33,34 There is an increasing body of research to suggest that anxiety is a more significant issue in COPD than depression.26
Anxiety disorders, especially generalized anxiety and panic disorders, have been found at higher rates among COPD patients than among the general population.26,35,36 Panic disorder has been found in up to 32% of depressed COPD patients and is a leading cause of Emergency Room visits.24 Anxiety has common negative effects on quality of life, functional status35 and disability levels. This seems logical given the unpredictability and fear-invoking nature of COPD-related dyspnea documented in recent quantitative and qualitative studies.24,28,29,36 Patients vividly described feelings of uncertainty, profound anxiety and fear of death experienced at times of markedly worsening dyspnea suggesting the importance of effective models of care to adequately assess and address dyspnea-related anxiety disorders in COPD.23
Depression has been the primary focus on much of the research into the psychological effects of COPD. Depression rates among patients with severe COPD are 2–4 times higher than those of the general population.23,24,33 COPD-related depression has been associated with decreased health-related QoL, functional status and coping, increased COPD symptoms, and failure of treatment for exacerbations.26,33,37 Further, in one study, the authors reported a significant increase in mortality rates for depressed patients hospitalized with a COPD exacerbation compared with those who were not depressed.33
Meanwhile fewer than 30% of healthcare providers recognize anxiety and/or depression and fewer still follow best practice treatment guidelines despite evidence that COPD patients with anxiety or depression have a higher risk of cognitive decline, functional decline, lower self-efficacy and more serious life events than those without these mental health concerns.23,38 Approaches to improve the timeliness of diagnosis and effective treatment of anxiety and/or depression-related disorders should take into account possible barriers at the level of the: (i) patient, due to the ongoing stigma of being diagnosed with a mental health disorder; (ii) healthcare provider, due to stereotypes, and/or lack of time or interest and, (iii) system, due to the poor integration of mental health care into the primary and acute care systems.23
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Relational/social effects |
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TopSummaryIntroductionLiving with COPD: psychological...Relational/social effectsRethinking our approach to...ConclusionReferences |
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The gradual physical incapacitation necessitates increasing dependence on others, often the patient's spouse or partner if s/he has one; otherwise another family member, friend or paid helper.10,16,19,39,40 While COPD patients have expressed quite clearly their desire not to burden loved ones, research suggests that caring for someone with severe COPD is likely to involve substantial burden.9,16,19,22,27,28,41 Such care may engender feelings of isolation, lack of support, vulnerability, anxiety, helplessness, powerlessness and/or a certain loss of freedom.27 Over time COPD can result in ‘strain, dependency, conflict and family disharmony, particularly among younger respondents where expectations and perceptions of partners’ expectations have been shattered’.10,42 A patient's increasing frustration, irritability, belligerence, emotional lability and/or other mood problems tend to affect family members, friends, as well as healthcare providers involved in the patient's care.10,16,19,29,43 These social ramifications are an important source of psychosocial suffering for patients as well as those who care for them.
As COPD progresses to advanced stages, it tends to impose a growing social isolation as individuals become virtually housebound due to increasing immobility and a common desire to avoid dyspnea inducing. Guilt, self-blame and stigmatization are also themes common to COPD due to its link with smoking behaviours and negative healthcare and societal attitudes.10,39,44,45 In contrast, peer support, a component of some pulmonary rehabilitation programmes, is a valuable dynamic that helps counter this social isolation by offering a context in which patients may feel understood and able to share their experience.10,39,46 Higher levels of positive social support have been associated with lower levels of depression, anxiety and better quality of life.39 Complimenting the need for support is the need to preserve a sense of autonomy, often manifested as self-efficacy or mastery, a central dynamic for many with COPD.6,20,42,47 Several studies have demonstrated the gradual, significant erosion of patients’ feelings of self-efficacy, ‘the extent of the belief that one is, or is not capable of performing a particular behaviour, or set of behaviours’.10,47–50
As COPD advances, sufferers and their carers grapple with the physical, emotional and spiritual effects of current and anticipated losses and resultant grief.10 Spiritual concerns are those common to many chronic terminal conditions—quest for meaning and coherence, fear of death, loss of meaningful work and recreation, a yearning for healing or strengthening of broken relationships, despair and/or loss of pre-existing faith in the face of ongoing physical decline, relational isolation, helplessness and dependence.10,51,52 One's sense of freedom and spontaneity is often lost when every action requires detailed planning because of the limitations imposed by dyspnea and fatigue.9,27,39,48,53 A general sense of security and trust in life can be a casualty of uncertainty, anxiety and intense vulnerability related to illness crises.22 Some patients experience a loss or significant narrowing of hope-related possibilities.39 Cumulative losses can erode self-efficacy, role-identity and identity-related integrity10,39,53 and engender significant anger, frustration, grief and for some, a search for new purpose and/or meaning in life within this evolving illness-related context. For some patients, existential or spiritual concerns and imminence of death are more distressful than illness-related pain or disability.54
As patients’ sense of well-being and ability to cope are challenged by advancing COPD, their focus tends to become survival, described by patients as the ‘ultimate self-care activity’,48 achieved through learning to adapt.10,16,27 Self-management is a common focus in studies of COPD patients, highlighting the central role of patient coping in treatment plans, i.e. the need to incorporate components patients feel strongly about with respect to their own adaptation process.10,16,27 The progressive, refractory nature of COPD and its concomitant burden of suffering have lead to increasing calls for newer more effective modes of care, and particularly for an expansion of the palliative care model to include chronic terminal illnesses such as COPD.17,55–70
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Rethinking our approach to care |
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TopSummaryIntroductionLiving with COPD: psychological...Relational/social effectsRethinking our approach to...ConclusionReferences |
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While traditional treatment of COPD has been directed more toward the underlying disease processes and less towards relevant psychosocial and patient-defined problems10,71,72 more comprehensive models of care could and should be more patient centred. Responding to the increasing interest in identifying and addressing short-comings in our current approach to care in chronic illness, Wagner (1998)74 proposed the Chronic Care Model (CCM). This model includes six components to consider when devising an approach to chronic care:
- Self-management—a collaborative dynamic between patient and provider in which the patient's needs are addressed (illness-related education, behavioural change and motivation strategies31).
- Decision support—care decisions are based on evidence-based guidelines wherever possible; best practices and expert consensus.
- Delivery system design—effective care is delivered where and when needed as efficiently as possible; tailored to disease trajectory;31,60,61 centralized, up-to-date patient status information; roles and tasks are clarified; effective interdisciplinary collaboration occurs; appropriate follow-up is done and reported.
- Clinical information system—registry is developed to allow tracking of individual patients and populations to enhance effective management and prevention efforts.
- Organization of health care—components integral to an environment fostering effective collaboration for comprehensiveness and continuity of care are identified and enabled.
- Community—alliances and partnerships are pursued at all levels, i.e. with and between community-based agencies, schools, faith groups, businesses, institutions and government.
If one of the elements of effective self-management is patient education, applying education theory to the planning of this aspect of care is critical. The incorporation of a few well chosen questions to solicit patients’ input regarding personally meaningful goals coupled with consistent monitoring of related outcomes as part of standard office visits could significantly impact both adherence to treatment, self-management and satisfaction with care.78 A simple question such as: has there been a change in your breathlessness since the last time I saw you (reported using a scale of 0 for none to10 for maximal)? And another to do with an unstructured assessment of the patient's functional status: Has there been any change in the difficulty or frequency of ‘X’? (where ‘X’ is an activity named as important by the patient, e.g. of an activity such as showering, leaving the house or a particular social activity).82 These brief, patient-centred assessments are an important complement to other clinical measurements and pulmonary function testing.
Although the model begins with self-management, it proposes five other components as necessary for effective care of patients with chronic conditions. The global proliferation of clinical practice guidelines for COPD attests to the importance clinicians already attach to the decision-making component.31,72,83,84 Delivery system design has been a major concern in COPD where the majority of care takes place in the home except during episodes of severe exacerbation. Finding ways to organize and deliver care efficiently when (during and after working hours) and where it is needed (in both urban and rural community settings) continues to be a challenge.84 Setting up central registries to track patients as individuals and as a disease-oriented population continues to be advocated as an important goal for broadening the scope and effectiveness of prevention and management efforts as well as palliative care services.66 The last two elements, health care environment and community partnerships, have received less attention, perhaps due to their less circumscribed nature. The apparent logic and theory behind CCM make it an attractive alternative to guide a rethinking of care in the COPD context, but its effectiveness requires careful evaluation.
While it has proved effective in the contexts of diabetes mellitus, depression, asthma and congestive heart failure, there has been little research with respect to CCM and COPD.31 Adams et al.31 in a systematic review reviewed COPD studies in which one or more of the CCM components were addressed and found that care strategies combining two or more CCM components were associated with significantly lower hospitalization rates, shorter stays and fewer Emergency Department/unscheduled visits with a concomitant decrease in associated cost. They advocate for attention to theoretical underpinnings when planning the self-management component, stressing the need for strategies based on sound education, behavioural change and motivational theories, all of which also depend on sound communication theory.31 Too often so-called ‘collaborative’ programmes focus solely on the ‘self-management’ component, which becomes an imposed educational programme72 that does not adequately take into account motivation factors attuned to patients’ goals.31
One example of an expanded approach matched with patient goals is a UK community-based programme, the Breathlessness Intervention Service (BIS), currently being implemented and evaluated as comprehensive outreach to patients and carers living with advanced COPD.55 We have described the BIS elsewhere in more detail,68 but in essence the philosophy of the programme mandates: specialist services, a focus on patient-identified specific needs, symptoms and informal carers’ concerns, a flexible approach responsive to patient and carer(s), education and support, attention to national guidelines and standards as well as known COPD research objectives and best practice issues. BIS offers non-pharmacologic interventions such as anxiety management (relaxation, visualization and meditation techniques) and positive psychological support, along with traditional pharmacologic regimens, all developed, evaluated and modified on the basis of each patient's situation.55 Early evaluation of such a programme underscores the value patients and carers place on feeling that their concerns are being heard.55
Other examples of more comprehensive approaches include pulmonary rehabilitation programmes that emphasize psychosocial/behavioural and educational interventions, self-management and enhanced self-efficacy.45,85,86 The effectiveness of these programmes [as evidenced by several randomized controlled trials (RCTs86)] is limited by their relative inaccessibility for many patients.72
Carried to logical endpoints, this comprehensive care models would include attention to patient and family preferences and goals for end-of-life care. Here a lack of consultation with patients can result in the imposition of unwanted life support or in the denial of such interventions when they might be effective and desired.17,87–89 Temporary measures such as assisted ventilation may be withheld on the basis of physicians making clinical judgements of futility.89 Such assessments have been shown to be overly pessimistic particularly in cases where likelihood for survival is considered to be very poor.89 The obvious potential for harm, increased suffering and denial of access to effective care seems to us a compelling reason to seek changes in practice that move towards a broader based, more collaborative model of care.
At the time of writing this review, there is a lack of evidence based on RCTs or meta-analyses (MA), the gold standard for evidence-based guideline development, for evaluating the efficacy of more comprehensive, collaborative approaches to care in COPD. However, evidence gleaned from well-designed, rigorously conducted qualitative studies is accumulating to support the need for such an effort.84,90–92 The use of qualitative methods is consistent with the purpose of increasing our understanding of the experiential, subjective nature of breathlessness and COPD generally.91 These concepts do not lend themselves well to quantitative measurement. Kulkarni93 points to the need for, and logic of, pursuing integration of the two research paradigms, each one valid for particular questions and contexts. A corpus of well-researched qualitative evidence can provide some guidance to clinicians making decisions about individual patients based on population-based guidelines. In these cases it is important to consider the contributions to clinical expertise of personal experience, expert consensus and other forms of evidence besides RCTs or MA.
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Conclusion |
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TopSummaryIntroductionLiving with COPD: psychological...Relational/social effectsRethinking our approach to...ConclusionReferences |
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Our healthcare systems are increasingly faced with the need to care for an aging population significantly burdened with chronic illnesses and frailty.60,61,66 This reality necessitates difficult choices that have fostered a major rethinking of how care for those living with chronic terminal conditions can be envisioned and delivered more cost-effectively and efficiently. The CCM is a patient-centred option that appears to address issues of comprehensiveness, relevance and continuity of care. Such a model relies on improved collaboration (and communication) between healthcare providers, patients, informal carers, healthcare administrators, policy makers and funders.60 The importance of maintaining a focus on patient-centredness cannot be over-emphasized if adherence to and effectiveness of the care plan is to be improved.75,76,94 Pierson67 points to the importance of keeping ‘the patient squarely in the middle of our discussion’ if we are to effectively improve care in the context of COPD. The 2004 NICE clinical practice guidelines for COPD echo this suggestion in their request for a research agenda that includes patient-focused strategies. They indicate a need for further studies focusing on the content and efficacy of educational packages for patients with COPD, and the content and efficacy of self-management strategies for exacerbations.83 Adams et al.31 in their recent systematic review underline the reality that COPD patients are often coping with significant co-morbidities, a situation that calls for research to evaluate exactly what elements of a comprehensive approach contribute most to improving care in given circumstances.
The ‘easy stuff’ in COPD—medications, oxygen therapy, pre-packaged education modules (long on information, short on interpersonal dynamics)—‘ may or may not actually benefit patients in ways they can appreciate’.67 The ‘hard stuff’—like smoking cessation, comprehensive pulmonary rehabilitation programmes and more collaborative, supportive patient self-management plans that attend to difficult realities like anxiety, depression, dyspnea, fatigue and social isolation needs attention. Rethinking our approach within the needed interdisciplinary context might go a long way toward making the ‘hard stuff’ easier for patients and their carers.
Conflict of interest: None declared.
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References |
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