Experiences of living and dying with COPD: a systematic review and synthesis of the qualitative empirical literature

Abstract

Objective of Analysis: The objective of this analysis was to review empirical qualitative research on the experiences of patients with chronic obstructive pulmonary disease (COPD), informal caregivers (“carers”), and health care providers—from the point of diagnosis, through daily living and exacerbation episodes, to the end of life.

Clinical Need and Target Population: Qualitative empirical studies (from social sciences, clinical, and related fields) can offer important information about how patients experience their condition. This exploration of the qualitative literature offers insights into patients’ perspectives on COPD, their needs, and how interventions might affect their experiences. The experiences of caregivers are also explored.

Research Question: What do patients with COPD, their informal caregivers (“carers”), and health care providers experience over the course of COPD?

Search Strategy: Literature searches for studies published from January 1, 2000, to November 2010 were performed on November 29, 2010, using OVID MEDLINE; on November 26, 2010, using ISI Web of Science; and on November 28, 2010, using EBSCO Cumulative Index to Nursing and Allied Health Literature (CINAHL). Titles and abstracts were reviewed by a single reviewer and, for those studies meeting the eligibility criteria, full-text articles were obtained. One additional report, highly relevant to the synthesis, appeared in early 2011 during the drafting of this analysis and was included post hoc.

Inclusion Criteria: English-language full reports

1. studies published between January 1, 2000, and November 2010

2. primary qualitative empirical research (using any descriptive or interpretive qualitative methodology, including the qualitative component of mixed-methods studies) and secondary syntheses of primary qualitative empirical research

3. studies addressing any aspect of the experiences of living or dying with COPD from the perspective of persons at risk, patients, health care providers, or informal carers; studies addressing multiple conditions were included if COPD was addressed explicitly

Exclusion Criteria:

1. studies addressing topics other than the experiences of living or dying with COPD from the perspective of persons at risk, patients, health care providers, or informal carers

2. studies labelled “qualitative” but not using a qualitative descriptive or interpretive methodology (e.g., case studies, experiments, or observational analysis using qualitative categorical variables)

3. quantitative research (i.e., using statistical hypothesis testing, using primarily quantitative data or analyses, or expressing results in quantitative or statistical terms)

4. studies that did not pose an empirical research objective or question, or involve the primary or secondary analysis of empirical data

Outcomes of Interest:

1. qualitative descriptions and interpretations (narrative or theoretical) of personal and social experiences of COPD

Experiences at Diagnosis:

1. Patients typically seek initial treatment for an acute episode rather than for chronic early symptoms of COPD.

2. Many patients initially misunderstand terms such as COPD, chronic obstructive pulmonary disease, or exacerbation.

3. Patients may not realize that COPD is incurable and fatal; some physicians themselves do not consider early COPD to be a fatal disease.

4. Smokers may not readily understand or agree with the idea that smoking caused or worsens their COPD. Those who believe there is a causal link may feel regret or shame.

Experiences of Living Day to Day:

1. COPD patients experience alternating good days and bad days. A roller-coaster pattern of ups and downs becomes apparent, and COPD becomes a way of life.

2. Patients use many means (social, psychological, medical, organizational) to control what they can, and to cope with what they cannot. Economic hardship, comorbidities, language barriers, and low health literacy can make coping more difficult.

3. Increasing vulnerability and unpredictable setbacks make patients dependent on others for practical assistance, but functional limitations, institutional living or self-consciousness can isolate patients from the people they need.

4. For smokers, medical advice to quit can conflict with increased desire to smoke as a coping strategy.

5. Many of the factors that isolate COPD patients from social contact also isolate them from health care.

Experiences of Exacerbations:

1. Patients may not always attribute repeated exacerbations to advancing disease, instead seeing them as temporary setbacks caused by activities, environmental factors, faltering self-management, or infection.

2. Lack of confidence in community-based services leads some patients to seek hospital admission, but patients also feel vulnerable when hospitalized. They may feel dependent on others for care or traumatized by hospital care routines.

3. Upon hospital discharge following an exacerbation, patients may face new levels of uncertainty about their illness, prognosis, care providers, and supports.

Experiences of the End of Life:

1. Patients tend to be poorly informed about the long-term prognosis of COPD and what to expect toward the end of life; this lack of understanding impairs quality of life as the disease progresses.

2. As the end of life approaches, COPD patients face the usual challenges of daily living, but in a context of increasing exacerbations and deepening dependency. Activities and mobility decrease, and life may become confined.

3. Some clinicians have difficulty identifying the beginning of “the end of life,” given the unpredictable course of COPD. Long-term physician-patient relationships, familiarity and understanding, trust, good communication skills, sensitivity, and secure discussion settings can help facilitate end-of-life discussions.

4. Divergent meanings and goals of palliative care in COPD lead to confusion about whether such services are the responsibility of home care, primary care, specialty care, or even critical care. Palliative end-of-life care may not be anticipated prior to referral for such care. A palliative care referral can convey the demoralizing message that providers have “given up.”

Experiences of Carers:

1. Carers’ challenges often echo patients’ challenges, and include anxiety, uncertainty about the future, helplessness, powerlessness, depression, difficulties maintaining employment, loss of mobility and freedoms, strained relationships, and growing social isolation.

2. Carers feel pressured by their many roles, struggling to maintain patience when they feel overwhelmed, and often feeling guilty about not doing enough.

3. Carers often face their own health problems and may have difficulty sustaining employment.

Synthesis: A Disease Trajectory Reflecting Patient Experiences:

1. The flux of needs in COPD calls for service continuity and flexibility to allow both health care providers and patients to respond to the unpredictable yet increasing demands of the disease over time.

Figure 1:. Citation Flow Chart^*

Figure 2:. COPD Disease Trajectory: Traditional View

Figure 3:. COPD Disease Trajectory: Updated Clinical View

Figure 4:. COPD Disease Trajectory: Current Clinical View

Figure 5:. COPD Disease Trajectory: Common Patient Experiences and Expectations