- Email: [email protected]
Patient Perceptions of Life-limiting Chronic Obstructive Pulmonary Disease
ORIGINAL RESEARCH
Patient Perceptions of Life-limiting Chronic Obstructive Pulmonary Disease Melissa Rubio, PhD, FNP ABSTRACT
Chronic obstructive pulmonary disease (COPD) is a life-limiting, progressive disease that eventually leads to death. Despite medical models supporting the use of quantitative measurements of airflow limitation to guide treatment, research on the patient perspective remains limited. This study explores a group of 6 patients living with stage IV COPD. Using qualitative methodology, this study describes the experience of disease burden from the individuals experiencing it. The findings of this study align with current qualitative literature on the phenomenon of living with COPD. The findings will help to guide individual care for these patients and prompt ongoing research in this area. Keywords: chronic illness, chronic obstructive pulmonary disease, illness perception, qualitative research Ó 2018 Elsevier Inc. All rights reserved.
C
hronic obstructive pulmonary disease (COPD) is a progressive decline of lung function that is life limiting. COPD has been widely studied in the literature for its effects on lung tissue and lung function and its economic burden on the health care system. However, research examining the patient perspective of living with severe COPD remains limited. The diagnosis and evaluation of COPD treatment relies heavily on spirometry, which is the measure of airflow limitation and most precisely the forced expiratory volume in 1 second (FEV1). FEV1 is decreased in patients with COPD. FEV1 also determines the severity of COPD and correlates with the Global Initiative for Lung Disease staging system, with stage IV being the most severe (or FEV1 < 30%).1 As FEV1 declines, health-related quality of life may also decline, but the extent of which at an individual level remains unclear. Although FEV1 is needed to determine the severity of disease and guide treatment, it is not an accurate measure of an individual patient’s perception of his or her illness.2,3 Although FEV1 and quality of life correlate, it is important to explore the extent of decline and its effect at the patient level. This article aims to describe and contextualize the experience of living with severe COPD and has the unique potential to inform health care providers of the potentially unmet needs of this population. www.npjournal.org
BACKGROUND
The heterogeneity of symptoms, even among patients in the same stage of COPD, has been studied as it relates to perceived health-related quality of life. Breathlessness is by far the most commonly reported symptom; however, patients often experience the degree of breathlessness and physical limitation differently. This may be because of individualized and complex biological, environmental, and psychological components.4 Health care providers may not understand the patient’s perceived burden either. In the COPD MIRROR (Medical Investigation of Respiratory COPD Perception) study, even though physicians regarded COPD as a major public health problem, they perceived the quality of life of their patients as better than the actual patients themselves did. In the study, physicians focused largely on clinical manifestations such as coughing and phlegm and disregarded the disease’s effect on their patients’ functional and social abilities.5 On the other hand, patients tend to endorse subjective feelings of breathlessness, anxiety, fear, distress, and social isolation.2,6 Breathlessness, the most common symptom among those with COPD, has been considered an extremely variable phenomenon between individuals, even between individuals with similar pulmonary function measurements.2 Stage IV COPD patients commonly report symptoms that are not well controlled, The Journal for Nurse Practitioners - JNP
1
regardless of medical management, as a core feature of their disease.7 In many cases, breathlessness is accompanied by fear and panic.8 Psychological distress such as anxiety and depression are common among those with chronic diseaseelike COPD, and these disorders can additionally impact quality of life and functional status.9 Severe, end-stage COPD is often met with increased fear of the reality of end of life. Despite the need for advanced care, conversations between providers and patients about end-of-life needs are poor. This may be largely caused by a lack of understanding of the benefits of early intervention palliative care for COPD.10 In terms of how they may have developed COPD, many patients point to negative health practices such as smoking and the guilt they feel for having smoked.2 Patients commonly endorse feelings of social isolation, particularly as their disease progresses, which may be an additional factor in psychological well-being.2 Moreover, being diagnosed with and living with COPD is typically not an abrupt-onset event; it is a progressive disorder that typically follows a vague and ill-defined trajectory, except in the case of acute exacerbation.6 As discussed, the medical model of COPD management depends on the findings of spirometry. It can be expected that as FEV1 declines symptoms increase and, therefore, quality of life declines.11 However, exploring the patient experience with lifelimiting COPD is crucial to understanding the complexity and heterogeneity of disease that spirometry fails to address. Understanding the patient experience and perception is a richer and more valuable measure of quality of life when living with COPD. COPD can negatively impact the mental, physical, and emotional well-being of patients in end-stage disease that the simple measurement of airflow limitation fails to address. Other models beyond quantitative measures are highly important when exploring quality of life in COPD. These models support psychological and social factors as playing a crucial role in daily functioning overall well-being. One of the most important psychological factors in chronic illness is illness perception.3 Illness perception is the chief concept of the common sense model (CSM), which suggests that patients have personal beliefs about their illness that 2
The Journal for Nurse Practitioners - JNP
often conflict with medical views of their disease.12 The CSM gives a framework for the perceptions, coping, and self-management actions of people faced with a serious illness.12 Although patients with severe airflow limitation have considerably poorer quality of life, the measurement of illness perception and the patient experience simply cannot be achieved with spirometry. A more appropriate measure of the burden of end-stage COPD is through patient interviewing and analysis of responses. The aim of this study was to examine qualitatively the experiences, feelings, and perceptions of patients living with stage IV COPD. METHODS
This study used interpretative phenomenological analysis (IPA) as a qualitative methodology. IPA is an emerging framework focused on how people make sense of their life experiences and is the context for this study.13 IPA is not simply a descriptive methodology, but rather an iterative and rigorous method for exploring and explaining the human experience. The primary aim of the IPA method is to seek to understand the patient’s worldview and to describe what it is like, but it also integrates the researcher’s analysis and interpretation of the phenomenon being explored. The method gives voice to the patient experience yet allows for interpretation and contextualization by the researcher to make sense of the experience based on its place in the current literature.13 Permission to conduct this study was granted by the Chamberlain University Institutional Review Board. The researcher has been extensively trained in human subjects protection, qualitative interviewing, and IPA methodology. All participants were recruited from a regenerative medicine clinic in Texas. All participants had documented stage IV COPD confirmed by preinterview spirometry with an FEV1 less than 30% of the predicted value. All subjects signed an informed consent, including consent for audiotaping of the interview. All interviews were completed on-site in the clinic at the time of the patient’s choosing. Participants were not compensated for their participation and were advised that they could cease or leave the interview at any time if desired. Interviews were audiotaped for later Volume
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transcription. The digital audio files were deleted within 2 days of each interview once the files were transcribed verbatim by the researcher herself. The resulting transcriptions are stored on an encrypted cloud-based repository and will be destroyed after a maximum of 7 years. For analysis and presentation of the data, alias names were given to all participants. Interviews were relatively open-ended with few leading and probing questions offered. Occasionally, clarification was requested to better understand the participants’ experience and to reliably analyze the interviews. Rigor was enhanced in this study by credibility, member checking, and transferability. Credibility was achieved by the researcher having prolonged engagement with the cohort being studied. Having worked with stage IV COPD patients for over a decade, including the most recent 3 years working directly with COPD patients exclusively, the researcher appreciates the scope and depth of the phenomenon being studied. Member checking was achieved by the researcher checking her analysis of the data with 2 study participants to ensure what the participant said was accurately received by the researcher. Finally, because the findings of this study are generalizable to other COPD patients in other settings, the conclusions are transferable to other situations and further research studies. Six in-depth interviews were conducted with 4 women and 2 men. Five of the 6 participants were on continuous, supplemental oxygen ranging from 2 to 10 L/min. The average age of participants was 70 years, and the mean FEV1 was 20% of the predicted value. Each interview was conducted over approximately 60 minutes. Recorded interviews were transcribed verbatim by the researcher after each interview. Analysis of the interviews using IPA methodology yields eventual superordinate themes through multiple iterations. In this study, 4 super-ordinate themes emerged: making sense of the diagnosis, burden, struggling, and facing mortality. Making Sense of the Diagnosis
All participants spoke of how they tried to make sense of the diagnosis of COPD, both the initial diagnosis and then being told they were now in the www.npjournal.org
most severe stage. Subthemes include a change in the way things used to be, lack of guidance, and coming to an understanding of what may have caused the disease. Many of the participants endorsing this theme discussed feelings of guilt for past smoking that likely precipitated the disease. Connections were made by many of the participants between smoking and the development of COPD. Despite receiving a diagnosis, many participants felt that the diagnosis was vague and that they were not well supported or educated by their health care provider in the beginning. Marvin said, “I was having some trouble breathing but it was a slow progression, you know. Then she diagnosed me and it was several years after that I saw a pulmonologist. She (my doctor) made it feel like it wasn’t really a big deal. So years went by. I didn’t realize until then how bad it was, so it took me a while to realize it. It makes me wonder ‘what have I done? It makes you feel bad that you let yourself get in that shape, you know? I blame myself, for smoking, for everything else I’ve done to my body. I could have lived a better life.” Susan said, “I was having some shortness of breath. The doctor took x-rays right away and they showed it was COPD. She told me to quit smoking, that was really it from her, and I didn’t do that, I was doing fine . . . so what. In 2014, I ended up in the ICU for 17 days, 10 days on a respirator. That was when I was told it was end-stage and I had to quit. What did I do? People just don’t understand. I’ve always been a take-charge person . . . do whatever I want. I can’t do that anymore. It’s definitely life-changing.” Rita said, “yeah, I was a smoker, but I wasn’t supposed to have that (COPD). I think it was maybe a combination with the dust of whatever. I didn’t think a whole lot of it, until I got sick. Now it’s all I think about. About what it did to me.” Burden
Participants all shared the theme of being a burden, both on others and of the disease on their own body. A common theme across 5 of the participants was the burden of wearing supplemental oxygen, particularly around others. Most of the participants endorsed The Journal for Nurse Practitioners - JNP
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feelings of depression and anxiety related to worrying about oxygen and also of social isolation related to wearing oxygen. Connie said, “It was depressing and that doctor would tell me you’ve got to carry your oxygen with you, you’ve gotta do it. Otherwise it is ruining your lungs more. So I did start carrying it. And pretty soon you’ve got ruts on your face. And no matter what, when you put your make-up on, you put the cannula up your nose and, to me, looking at myself like that, I’m embarrassed. It’s not a pretty sight.” Benjamin said, “It (oxygen) burns my nose for one thing. Sometimes you don’t think about it and you start to walk off and it pulls you backwards, like a tether. It’s dangerous, you know, if you get around a flame or grease. If the power goes out then what? I don’t have tanks, I have the concentrator. I can’t travel. You really have to plan forever in advance.” Susan said, “most people who aren’t sick don’t understand. You’re limited on where you can go, you’re definitely limited on what you can do. He (my husband) gets irritated a lot.” Trudy said, “I used to get upset, or let people upset me, because they would say you’re yelling at me, or you’re angry at me. And I wasn’t. I’m not angry at you, I’m trying to breathe. When it’s real bad I get raspy, and if I’m coming out loud it’s because I’m trying to get that air in. And so that can make you want to cry, you know, it hurts, when people look at you like that, because it’s a disease that you cannot see.” Trudy goes on, “I had to go to group therapy once and someone complained about my oxygen concentrator clicking. I actually had a woman ask me to turn it off. Just no concept. And so I said if the choice is me dying or you hearing the clicking guess what it’s gonna be. So I stopped going there, being around other people.” Struggling
The struggle of daily living is prominent in the interviews. All of the participants used the phrase struggling as they described how they manage activities of daily living and the effects of COPD on their bodies. Connie explains, “I’d start getting panic attacks and the stress of not being able to breathe, like 4
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somebody’s got a scarf around my neck strangling me, wearing a bag over my head, that’s what it feels like. Like hold your breath for as long as you can then you’ll know what we’re going though. Your heart, my heart is working harder, all the strength in the body is going towards moving my lungs.” Trudy said, “If you are without oxygen you’re not even thinking clearly. I wish they would show the film that we used to see in the airlines of the flight attendant, where all of the air goes out of the cabin and she’s trying to put on lipstick. And she thinks she’s fine, but pretty soon the lipstick is up here and over here, and you know. Then she is shaking and the whole bit, and that’s me, I do shake, and that’s scary. Each time I just turn it over to the Lord and just ask for help and just keep pleading until I calm down. I hate it.” Some of the participants endorsed thoughts of growing older with COPD as not being what they expected for their lives. They spoke of struggling with the reality of the burden of breathlessness. Benjamin said, “It all hit me when my wife and I could retire, so I was lucky there, but we don’t get to enjoy retirement.” Connie said, “How much worse can this get? I’ve worked my whole life. I’ve worked so hard. I have saved my money, wanted to retire and we hear about these ‘Golden Years’ and, to me, these aren’t Golden Years, they are, and I don’t want to swear, but that’s the kind of years.” Facing Mortality
Most of the participants spoke about their rationalization with death but had difficulty in thinking about the future. Susan said, “My doctors already told me there is nothing more they can do. When I was on the respirator, for 10 days, they told my husband that was it. And I’m at peace with that.” Connie said, “My doctor said a lung transplant would be the only thing that might save my life. He said I could live for sure for another five years. I went home and thought about it, slept on it, prayed on it, and thought five years, to take somebody’s healthy lungs, even though I know that person died, God bless their soul, I could not take those lungs knowing I could only use them for five years. Give them to a Volume
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younger person, a healthier person, somebody that could have a longer life. It would take me a year to recuperate, then what, 4 years? I couldn’t do that. So I live with this the way it is.” Trudy said, “I try not to think about it too much because if I focus on ‘you’re on your way out,’ that’s depressing, you know. There are so many things I would still like to do, but I honestly must say there are some days that I wake up and I think ‘good Lord, why am I still here.’ There has to be a reason why I’m still here. Some days it’s a real effort. It’s a real effort.” DISCUSSION
All participants endorsed how the burden of a lifelimiting disease affected their quality of life. Participants openly shared their experiences of what it is like to live with stage IV COPD, struggling with daily life and facing their own mortality. The findings of this study align with results of similar qualitative studies exploring the perceptions of COPD patients. This study also aligns with CSM, which explains that perceived quality of life is heavily influenced by an individual’s perception of his or her illness.11 Participants endorsed how they made sense of the diagnosis by connecting their disease to past negative health practices, such as smoking. This aligns with the guilt phenomenon discussed by Disler et al.2 Most spoke of some degree of social isolation and a vague illness trajectory, often starting with breathlessness and a visit to their health care provider. Each participant was able to identity a period when there was something wrong with his or her health but that was not yet defined. Patients endorsed thoughts that their initial diagnosis left little meaning for them; many were told to quit smoking or take an inhaler, but many did not receive the initial support that was expected from their provider. Prognosis, if even mentioned at all, was a fleeting topic and limited to the discussion that COPD cannot be cured. These themes of social isolation and lack of support align with the qualitative work of Gysels and Higginson (2010), who concluded similar findings in their study. This study endorses findings in the literature that severity of disease and end of life are not often addressed. Supportive care (ie, having conversations about end-of-life needs) is crucial for providers caring for those with COPD. Tools to aid in the prognosis of www.npjournal.org
end-stage COPD may help clinicians to open the discussion with their patients. One tool that can be used to predict mortality is the BODE index (body mass, obstruction, dyspnea, and exercise capacity), which gives a global estimate of disease severity and risk for exacerbation.10 Integrative models of care including primary care providers and palliative care providers may provide better access to care, identification of patient needs, and supportive care, but the conversation with patients and their families needs to improve. For those patients who can tolerate exercise, referral to a pulmonary rehabilitation (PR) program may deliver a holistic approach to the disease, incorporating coping techniques and social support as well as limiting physical deconditioning as COPD progresses. This may be a viable option for those who are able to participate, and several companies have started to develop home-based PR programs for those without easy access to a facility or those who are homebound.14 PR programs further speak to the benefit of a multidisciplinary and multifaceted approach to management of end-stage COPD. The findings of this study and similar qualitative work challenge the current medical model of quantitative, spirometry measurement to guide COPD patient care. Objective measures such as FEV1 do not add substantively to the explanation of quality of life in stage IV COPD patients. Personalized care that is meaningful to the patient and connects to their perceptions and beliefs should be central to interventions for these patients. The development of guidelines that incorporate the patient perspective can better guide effective care for patients with this burdensome disease. Limitations
The 6 participants in this study may not fully represent every patient with end-stage COPD. Although the study participants were both men and women, all of the participants were white and may not represent the feelings of other ethnic groups. Future research in this area should study perceptions of people with diverse ethnicities. Also, there remains a bias in scientific research against the rigor involved in qualitative research. Strict adherence to the IPA methodology, the experience of the researcher, and the systematic review of the data support rigor in this study. The Journal for Nurse Practitioners - JNP
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CONCLUSIONS
This article included participants with end-stage COPD and explored their unique and personal lived experiences with the disease. The interrelatedness of participant responses was evident throughout the interviews with a strong emphasis on the burden of the disease. Despite advances in the management of prescribed treatment, those with COPD still experience a high symptom burden. COPD is a complex condition with many variables contributing to the patient experience of symptoms that are crucial to identify and discuss. Early interventions for those diagnosed with COPD, in any stage, must include symptom management, patient and family education, ongoing patient and family communication, ongoing assessment of quality of life and physical functioning, and advanced care planning with an emphasis on palliative care needs. Further interventions also need to involve reframing our services to include those that meet the personalized needs of the patient. Patient perspective of burden is crucial in effective management, treatment planning, and patient satisfaction. Although through these interviews it is shown that patients with end-stage FEV1 values share very similar experiences, there is incredible value to the individual meanings that patients assign to having a lifelimiting disease. References 1. Vogelmeier CF, Criner GJ, Martinez FJ, et al. Global Strategy for the Diagnosis, Management, and Prevention of Chronic Obstructive Lung Disease 2017 Report. GOLD Executive Summary. Am J Respir Crit Care Med. 2017;195(5):557-582. https://doi.org/10.1164/rccm.201701-0218PP. 2. Disler RT, Green A, Luckett T, et al. Experience of advanced chronic obstructive pulmonary disease: metasynthesis of qualitative research. J Pain Symptom Manage. 2014;48(6):1182-1199. https://doi.org/10.1016/j .jpainsymman.2014.03.009. 3. Weldam SW, Lammers J-WJ, Heijmans MJ, Schuurmans MJ. Perceived quality of life in chronic obstructive pulmonary disease patients: a
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4.
5.
6.
7.
8.
9.
10.
11.
12.
13.
14.
cross-sectional study in primary care on the role of illness perceptions. BMC Fam Pract. 2014;15(1):140. https://doi.org/10.1186/1471-2296-15-140. Faner R, Agustí Á. Multilevel, dynamic chronic obstructive pulmonary disease heterogeneity: a challenge for personalized medicine. Ann Am Thorac Soc. 2016;13(suppl 2):S466-S470. https://doi.org/10.1513/AnnalsATS.201605372AW. Celli B, Blasi F, Gaga M, et al. Perception of symptoms and quality of life comparison of patients’ and physicians’ views in the COPD MIRROR study. Int J Chron Obstruct Pulmon Dis. 2017;12:2189-2196. https://doi.org/10.2147/ COPD.S136711. Marx G, Nasse M, Stanze H, Boakye SO, Nauck F, Schneider N. Meaning of living with severe chronic obstructive lung disease: a qualitative study. BMJ Open. 2016;6(12):e011555. https://doi.org/10.1136/bmjopen-2016-011555. Wong SSL, Abdullah N, Abdullah A, et al. Unmet needs of patients with chronic obstructive pulmonary disease (COPD): a qualitative study on patients and doctors. BMC Fam Pract. 2014;15:67. https://doi.org/10.1186/ 1471-2296-15-67. Gysels M, Reilly CC, Jolley CJ, et al. Dignity through integrated symptom management: lessons from the breathlessness support service. J Pain Symptom Manage. 2016;52(4):515-524. https://doi.org/10.1016/j. jpainsymman.2016.04.010. Pumar MI, Gray CR, Walsh JR, Yang IA, Rolls TA, Ward DL. Anxiety and depression-important psychological comorbidities of COPD. J Thorac Dis. 2014;6(11):1615-1631. https://doi.org/10.3978/j.issn.2072-1439.2014. 09.28. Tavares N, Jarrett N, Hunt K, Wilkinson T. Palliative and end-of-life care conversations in COPD: a systematic literature review. ERJ Open Res. 2017;3(2). 00068-2016, https://doi.org/10.1183/23120541.00068-2016. Weldam SW, Lammers J-WJ, Decates RL, Schuurmans MJ. Daily activities and health-related quality of life in patients with chronic obstructive pulmonary disease: psychological determinants: a cross-sectional study. Health Qual Life Outcomes. 2013;11(1):190. https://doi.org/10.1186/1477-752511-190. Tiemensma J, Gaab E, Voorhaar M, Asijee G, Kaptein AA. Illness perceptions and coping determine quality of life in COPD patients. Int J Chron Obstruct Pulmon Dis. 2016;11:2001-2007. https://doi.org/10.2147/COPD.S109227. Larkin M, Thompson A. Interpretative phenomenological analysis. In: Qualitative Research Methods in Mental Health and Psychotherapy: A Guide for Students and Practitioners. 2012. Los Angeles: SAGE. https://doi.org/10. 1002/9781119973249. Holland AE, Mahal A, Hill CJ, et al. Home-based rehabilitation for COPD using minimal resources: a randomised, controlled equivalence trial. Thorax. 2017;72(1):57-65. https://doi.org/10.1136/thoraxjnl-2016-208514.
Melissa Rubio, PhD, FNP, is a visiting professor at Chamberlain University in Downer’s Grove, IL. She is available at [email protected]. In compliance with national ethical guidelines, the author reports no relationships with business or industry that would pose a conflict of interest. 1555-4155/18/$ see front matter © 2018 Elsevier Inc. All rights reserved. https://doi.org/10.1016/j.nurpra.2018.10.005
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Patient Perceptions of Life-limiting Chronic Obstructive Pulmonary Disease Melissa Rubio, PhD, FNP ABSTRACT
Chronic obstructive pulmonary disease (COPD) is a life-limiting, progressive disease that eventually leads to death. Despite medical models supporting the use of quantitative measurements of airflow limitation to guide treatment, research on the patient perspective remains limited. This study explores a group of 6 patients living with stage IV COPD. Using qualitative methodology, this study describes the experience of disease burden from the individuals experiencing it. The findings of this study align with current qualitative literature on the phenomenon of living with COPD. The findings will help to guide individual care for these patients and prompt ongoing research in this area. Keywords: chronic illness, chronic obstructive pulmonary disease, illness perception, qualitative research Ó 2018 Elsevier Inc. All rights reserved.
C
hronic obstructive pulmonary disease (COPD) is a progressive decline of lung function that is life limiting. COPD has been widely studied in the literature for its effects on lung tissue and lung function and its economic burden on the health care system. However, research examining the patient perspective of living with severe COPD remains limited. The diagnosis and evaluation of COPD treatment relies heavily on spirometry, which is the measure of airflow limitation and most precisely the forced expiratory volume in 1 second (FEV1). FEV1 is decreased in patients with COPD. FEV1 also determines the severity of COPD and correlates with the Global Initiative for Lung Disease staging system, with stage IV being the most severe (or FEV1 < 30%).1 As FEV1 declines, health-related quality of life may also decline, but the extent of which at an individual level remains unclear. Although FEV1 is needed to determine the severity of disease and guide treatment, it is not an accurate measure of an individual patient’s perception of his or her illness.2,3 Although FEV1 and quality of life correlate, it is important to explore the extent of decline and its effect at the patient level. This article aims to describe and contextualize the experience of living with severe COPD and has the unique potential to inform health care providers of the potentially unmet needs of this population. www.npjournal.org
BACKGROUND
The heterogeneity of symptoms, even among patients in the same stage of COPD, has been studied as it relates to perceived health-related quality of life. Breathlessness is by far the most commonly reported symptom; however, patients often experience the degree of breathlessness and physical limitation differently. This may be because of individualized and complex biological, environmental, and psychological components.4 Health care providers may not understand the patient’s perceived burden either. In the COPD MIRROR (Medical Investigation of Respiratory COPD Perception) study, even though physicians regarded COPD as a major public health problem, they perceived the quality of life of their patients as better than the actual patients themselves did. In the study, physicians focused largely on clinical manifestations such as coughing and phlegm and disregarded the disease’s effect on their patients’ functional and social abilities.5 On the other hand, patients tend to endorse subjective feelings of breathlessness, anxiety, fear, distress, and social isolation.2,6 Breathlessness, the most common symptom among those with COPD, has been considered an extremely variable phenomenon between individuals, even between individuals with similar pulmonary function measurements.2 Stage IV COPD patients commonly report symptoms that are not well controlled, The Journal for Nurse Practitioners - JNP
1
regardless of medical management, as a core feature of their disease.7 In many cases, breathlessness is accompanied by fear and panic.8 Psychological distress such as anxiety and depression are common among those with chronic diseaseelike COPD, and these disorders can additionally impact quality of life and functional status.9 Severe, end-stage COPD is often met with increased fear of the reality of end of life. Despite the need for advanced care, conversations between providers and patients about end-of-life needs are poor. This may be largely caused by a lack of understanding of the benefits of early intervention palliative care for COPD.10 In terms of how they may have developed COPD, many patients point to negative health practices such as smoking and the guilt they feel for having smoked.2 Patients commonly endorse feelings of social isolation, particularly as their disease progresses, which may be an additional factor in psychological well-being.2 Moreover, being diagnosed with and living with COPD is typically not an abrupt-onset event; it is a progressive disorder that typically follows a vague and ill-defined trajectory, except in the case of acute exacerbation.6 As discussed, the medical model of COPD management depends on the findings of spirometry. It can be expected that as FEV1 declines symptoms increase and, therefore, quality of life declines.11 However, exploring the patient experience with lifelimiting COPD is crucial to understanding the complexity and heterogeneity of disease that spirometry fails to address. Understanding the patient experience and perception is a richer and more valuable measure of quality of life when living with COPD. COPD can negatively impact the mental, physical, and emotional well-being of patients in end-stage disease that the simple measurement of airflow limitation fails to address. Other models beyond quantitative measures are highly important when exploring quality of life in COPD. These models support psychological and social factors as playing a crucial role in daily functioning overall well-being. One of the most important psychological factors in chronic illness is illness perception.3 Illness perception is the chief concept of the common sense model (CSM), which suggests that patients have personal beliefs about their illness that 2
The Journal for Nurse Practitioners - JNP
often conflict with medical views of their disease.12 The CSM gives a framework for the perceptions, coping, and self-management actions of people faced with a serious illness.12 Although patients with severe airflow limitation have considerably poorer quality of life, the measurement of illness perception and the patient experience simply cannot be achieved with spirometry. A more appropriate measure of the burden of end-stage COPD is through patient interviewing and analysis of responses. The aim of this study was to examine qualitatively the experiences, feelings, and perceptions of patients living with stage IV COPD. METHODS
This study used interpretative phenomenological analysis (IPA) as a qualitative methodology. IPA is an emerging framework focused on how people make sense of their life experiences and is the context for this study.13 IPA is not simply a descriptive methodology, but rather an iterative and rigorous method for exploring and explaining the human experience. The primary aim of the IPA method is to seek to understand the patient’s worldview and to describe what it is like, but it also integrates the researcher’s analysis and interpretation of the phenomenon being explored. The method gives voice to the patient experience yet allows for interpretation and contextualization by the researcher to make sense of the experience based on its place in the current literature.13 Permission to conduct this study was granted by the Chamberlain University Institutional Review Board. The researcher has been extensively trained in human subjects protection, qualitative interviewing, and IPA methodology. All participants were recruited from a regenerative medicine clinic in Texas. All participants had documented stage IV COPD confirmed by preinterview spirometry with an FEV1 less than 30% of the predicted value. All subjects signed an informed consent, including consent for audiotaping of the interview. All interviews were completed on-site in the clinic at the time of the patient’s choosing. Participants were not compensated for their participation and were advised that they could cease or leave the interview at any time if desired. Interviews were audiotaped for later Volume
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Issue
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2018
transcription. The digital audio files were deleted within 2 days of each interview once the files were transcribed verbatim by the researcher herself. The resulting transcriptions are stored on an encrypted cloud-based repository and will be destroyed after a maximum of 7 years. For analysis and presentation of the data, alias names were given to all participants. Interviews were relatively open-ended with few leading and probing questions offered. Occasionally, clarification was requested to better understand the participants’ experience and to reliably analyze the interviews. Rigor was enhanced in this study by credibility, member checking, and transferability. Credibility was achieved by the researcher having prolonged engagement with the cohort being studied. Having worked with stage IV COPD patients for over a decade, including the most recent 3 years working directly with COPD patients exclusively, the researcher appreciates the scope and depth of the phenomenon being studied. Member checking was achieved by the researcher checking her analysis of the data with 2 study participants to ensure what the participant said was accurately received by the researcher. Finally, because the findings of this study are generalizable to other COPD patients in other settings, the conclusions are transferable to other situations and further research studies. Six in-depth interviews were conducted with 4 women and 2 men. Five of the 6 participants were on continuous, supplemental oxygen ranging from 2 to 10 L/min. The average age of participants was 70 years, and the mean FEV1 was 20% of the predicted value. Each interview was conducted over approximately 60 minutes. Recorded interviews were transcribed verbatim by the researcher after each interview. Analysis of the interviews using IPA methodology yields eventual superordinate themes through multiple iterations. In this study, 4 super-ordinate themes emerged: making sense of the diagnosis, burden, struggling, and facing mortality. Making Sense of the Diagnosis
All participants spoke of how they tried to make sense of the diagnosis of COPD, both the initial diagnosis and then being told they were now in the www.npjournal.org
most severe stage. Subthemes include a change in the way things used to be, lack of guidance, and coming to an understanding of what may have caused the disease. Many of the participants endorsing this theme discussed feelings of guilt for past smoking that likely precipitated the disease. Connections were made by many of the participants between smoking and the development of COPD. Despite receiving a diagnosis, many participants felt that the diagnosis was vague and that they were not well supported or educated by their health care provider in the beginning. Marvin said, “I was having some trouble breathing but it was a slow progression, you know. Then she diagnosed me and it was several years after that I saw a pulmonologist. She (my doctor) made it feel like it wasn’t really a big deal. So years went by. I didn’t realize until then how bad it was, so it took me a while to realize it. It makes me wonder ‘what have I done? It makes you feel bad that you let yourself get in that shape, you know? I blame myself, for smoking, for everything else I’ve done to my body. I could have lived a better life.” Susan said, “I was having some shortness of breath. The doctor took x-rays right away and they showed it was COPD. She told me to quit smoking, that was really it from her, and I didn’t do that, I was doing fine . . . so what. In 2014, I ended up in the ICU for 17 days, 10 days on a respirator. That was when I was told it was end-stage and I had to quit. What did I do? People just don’t understand. I’ve always been a take-charge person . . . do whatever I want. I can’t do that anymore. It’s definitely life-changing.” Rita said, “yeah, I was a smoker, but I wasn’t supposed to have that (COPD). I think it was maybe a combination with the dust of whatever. I didn’t think a whole lot of it, until I got sick. Now it’s all I think about. About what it did to me.” Burden
Participants all shared the theme of being a burden, both on others and of the disease on their own body. A common theme across 5 of the participants was the burden of wearing supplemental oxygen, particularly around others. Most of the participants endorsed The Journal for Nurse Practitioners - JNP
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feelings of depression and anxiety related to worrying about oxygen and also of social isolation related to wearing oxygen. Connie said, “It was depressing and that doctor would tell me you’ve got to carry your oxygen with you, you’ve gotta do it. Otherwise it is ruining your lungs more. So I did start carrying it. And pretty soon you’ve got ruts on your face. And no matter what, when you put your make-up on, you put the cannula up your nose and, to me, looking at myself like that, I’m embarrassed. It’s not a pretty sight.” Benjamin said, “It (oxygen) burns my nose for one thing. Sometimes you don’t think about it and you start to walk off and it pulls you backwards, like a tether. It’s dangerous, you know, if you get around a flame or grease. If the power goes out then what? I don’t have tanks, I have the concentrator. I can’t travel. You really have to plan forever in advance.” Susan said, “most people who aren’t sick don’t understand. You’re limited on where you can go, you’re definitely limited on what you can do. He (my husband) gets irritated a lot.” Trudy said, “I used to get upset, or let people upset me, because they would say you’re yelling at me, or you’re angry at me. And I wasn’t. I’m not angry at you, I’m trying to breathe. When it’s real bad I get raspy, and if I’m coming out loud it’s because I’m trying to get that air in. And so that can make you want to cry, you know, it hurts, when people look at you like that, because it’s a disease that you cannot see.” Trudy goes on, “I had to go to group therapy once and someone complained about my oxygen concentrator clicking. I actually had a woman ask me to turn it off. Just no concept. And so I said if the choice is me dying or you hearing the clicking guess what it’s gonna be. So I stopped going there, being around other people.” Struggling
The struggle of daily living is prominent in the interviews. All of the participants used the phrase struggling as they described how they manage activities of daily living and the effects of COPD on their bodies. Connie explains, “I’d start getting panic attacks and the stress of not being able to breathe, like 4
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somebody’s got a scarf around my neck strangling me, wearing a bag over my head, that’s what it feels like. Like hold your breath for as long as you can then you’ll know what we’re going though. Your heart, my heart is working harder, all the strength in the body is going towards moving my lungs.” Trudy said, “If you are without oxygen you’re not even thinking clearly. I wish they would show the film that we used to see in the airlines of the flight attendant, where all of the air goes out of the cabin and she’s trying to put on lipstick. And she thinks she’s fine, but pretty soon the lipstick is up here and over here, and you know. Then she is shaking and the whole bit, and that’s me, I do shake, and that’s scary. Each time I just turn it over to the Lord and just ask for help and just keep pleading until I calm down. I hate it.” Some of the participants endorsed thoughts of growing older with COPD as not being what they expected for their lives. They spoke of struggling with the reality of the burden of breathlessness. Benjamin said, “It all hit me when my wife and I could retire, so I was lucky there, but we don’t get to enjoy retirement.” Connie said, “How much worse can this get? I’ve worked my whole life. I’ve worked so hard. I have saved my money, wanted to retire and we hear about these ‘Golden Years’ and, to me, these aren’t Golden Years, they are, and I don’t want to swear, but that’s the kind of years.” Facing Mortality
Most of the participants spoke about their rationalization with death but had difficulty in thinking about the future. Susan said, “My doctors already told me there is nothing more they can do. When I was on the respirator, for 10 days, they told my husband that was it. And I’m at peace with that.” Connie said, “My doctor said a lung transplant would be the only thing that might save my life. He said I could live for sure for another five years. I went home and thought about it, slept on it, prayed on it, and thought five years, to take somebody’s healthy lungs, even though I know that person died, God bless their soul, I could not take those lungs knowing I could only use them for five years. Give them to a Volume
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younger person, a healthier person, somebody that could have a longer life. It would take me a year to recuperate, then what, 4 years? I couldn’t do that. So I live with this the way it is.” Trudy said, “I try not to think about it too much because if I focus on ‘you’re on your way out,’ that’s depressing, you know. There are so many things I would still like to do, but I honestly must say there are some days that I wake up and I think ‘good Lord, why am I still here.’ There has to be a reason why I’m still here. Some days it’s a real effort. It’s a real effort.” DISCUSSION
All participants endorsed how the burden of a lifelimiting disease affected their quality of life. Participants openly shared their experiences of what it is like to live with stage IV COPD, struggling with daily life and facing their own mortality. The findings of this study align with results of similar qualitative studies exploring the perceptions of COPD patients. This study also aligns with CSM, which explains that perceived quality of life is heavily influenced by an individual’s perception of his or her illness.11 Participants endorsed how they made sense of the diagnosis by connecting their disease to past negative health practices, such as smoking. This aligns with the guilt phenomenon discussed by Disler et al.2 Most spoke of some degree of social isolation and a vague illness trajectory, often starting with breathlessness and a visit to their health care provider. Each participant was able to identity a period when there was something wrong with his or her health but that was not yet defined. Patients endorsed thoughts that their initial diagnosis left little meaning for them; many were told to quit smoking or take an inhaler, but many did not receive the initial support that was expected from their provider. Prognosis, if even mentioned at all, was a fleeting topic and limited to the discussion that COPD cannot be cured. These themes of social isolation and lack of support align with the qualitative work of Gysels and Higginson (2010), who concluded similar findings in their study. This study endorses findings in the literature that severity of disease and end of life are not often addressed. Supportive care (ie, having conversations about end-of-life needs) is crucial for providers caring for those with COPD. Tools to aid in the prognosis of www.npjournal.org
end-stage COPD may help clinicians to open the discussion with their patients. One tool that can be used to predict mortality is the BODE index (body mass, obstruction, dyspnea, and exercise capacity), which gives a global estimate of disease severity and risk for exacerbation.10 Integrative models of care including primary care providers and palliative care providers may provide better access to care, identification of patient needs, and supportive care, but the conversation with patients and their families needs to improve. For those patients who can tolerate exercise, referral to a pulmonary rehabilitation (PR) program may deliver a holistic approach to the disease, incorporating coping techniques and social support as well as limiting physical deconditioning as COPD progresses. This may be a viable option for those who are able to participate, and several companies have started to develop home-based PR programs for those without easy access to a facility or those who are homebound.14 PR programs further speak to the benefit of a multidisciplinary and multifaceted approach to management of end-stage COPD. The findings of this study and similar qualitative work challenge the current medical model of quantitative, spirometry measurement to guide COPD patient care. Objective measures such as FEV1 do not add substantively to the explanation of quality of life in stage IV COPD patients. Personalized care that is meaningful to the patient and connects to their perceptions and beliefs should be central to interventions for these patients. The development of guidelines that incorporate the patient perspective can better guide effective care for patients with this burdensome disease. Limitations
The 6 participants in this study may not fully represent every patient with end-stage COPD. Although the study participants were both men and women, all of the participants were white and may not represent the feelings of other ethnic groups. Future research in this area should study perceptions of people with diverse ethnicities. Also, there remains a bias in scientific research against the rigor involved in qualitative research. Strict adherence to the IPA methodology, the experience of the researcher, and the systematic review of the data support rigor in this study. The Journal for Nurse Practitioners - JNP
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CONCLUSIONS
This article included participants with end-stage COPD and explored their unique and personal lived experiences with the disease. The interrelatedness of participant responses was evident throughout the interviews with a strong emphasis on the burden of the disease. Despite advances in the management of prescribed treatment, those with COPD still experience a high symptom burden. COPD is a complex condition with many variables contributing to the patient experience of symptoms that are crucial to identify and discuss. Early interventions for those diagnosed with COPD, in any stage, must include symptom management, patient and family education, ongoing patient and family communication, ongoing assessment of quality of life and physical functioning, and advanced care planning with an emphasis on palliative care needs. Further interventions also need to involve reframing our services to include those that meet the personalized needs of the patient. Patient perspective of burden is crucial in effective management, treatment planning, and patient satisfaction. Although through these interviews it is shown that patients with end-stage FEV1 values share very similar experiences, there is incredible value to the individual meanings that patients assign to having a lifelimiting disease. References 1. Vogelmeier CF, Criner GJ, Martinez FJ, et al. Global Strategy for the Diagnosis, Management, and Prevention of Chronic Obstructive Lung Disease 2017 Report. GOLD Executive Summary. Am J Respir Crit Care Med. 2017;195(5):557-582. https://doi.org/10.1164/rccm.201701-0218PP. 2. Disler RT, Green A, Luckett T, et al. Experience of advanced chronic obstructive pulmonary disease: metasynthesis of qualitative research. J Pain Symptom Manage. 2014;48(6):1182-1199. https://doi.org/10.1016/j .jpainsymman.2014.03.009. 3. Weldam SW, Lammers J-WJ, Heijmans MJ, Schuurmans MJ. Perceived quality of life in chronic obstructive pulmonary disease patients: a
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cross-sectional study in primary care on the role of illness perceptions. BMC Fam Pract. 2014;15(1):140. https://doi.org/10.1186/1471-2296-15-140. Faner R, Agustí Á. Multilevel, dynamic chronic obstructive pulmonary disease heterogeneity: a challenge for personalized medicine. Ann Am Thorac Soc. 2016;13(suppl 2):S466-S470. https://doi.org/10.1513/AnnalsATS.201605372AW. Celli B, Blasi F, Gaga M, et al. Perception of symptoms and quality of life comparison of patients’ and physicians’ views in the COPD MIRROR study. Int J Chron Obstruct Pulmon Dis. 2017;12:2189-2196. https://doi.org/10.2147/ COPD.S136711. Marx G, Nasse M, Stanze H, Boakye SO, Nauck F, Schneider N. Meaning of living with severe chronic obstructive lung disease: a qualitative study. BMJ Open. 2016;6(12):e011555. https://doi.org/10.1136/bmjopen-2016-011555. Wong SSL, Abdullah N, Abdullah A, et al. Unmet needs of patients with chronic obstructive pulmonary disease (COPD): a qualitative study on patients and doctors. BMC Fam Pract. 2014;15:67. https://doi.org/10.1186/ 1471-2296-15-67. Gysels M, Reilly CC, Jolley CJ, et al. Dignity through integrated symptom management: lessons from the breathlessness support service. J Pain Symptom Manage. 2016;52(4):515-524. https://doi.org/10.1016/j. jpainsymman.2016.04.010. Pumar MI, Gray CR, Walsh JR, Yang IA, Rolls TA, Ward DL. Anxiety and depression-important psychological comorbidities of COPD. J Thorac Dis. 2014;6(11):1615-1631. https://doi.org/10.3978/j.issn.2072-1439.2014. 09.28. Tavares N, Jarrett N, Hunt K, Wilkinson T. Palliative and end-of-life care conversations in COPD: a systematic literature review. ERJ Open Res. 2017;3(2). 00068-2016, https://doi.org/10.1183/23120541.00068-2016. Weldam SW, Lammers J-WJ, Decates RL, Schuurmans MJ. Daily activities and health-related quality of life in patients with chronic obstructive pulmonary disease: psychological determinants: a cross-sectional study. Health Qual Life Outcomes. 2013;11(1):190. https://doi.org/10.1186/1477-752511-190. Tiemensma J, Gaab E, Voorhaar M, Asijee G, Kaptein AA. Illness perceptions and coping determine quality of life in COPD patients. Int J Chron Obstruct Pulmon Dis. 2016;11:2001-2007. https://doi.org/10.2147/COPD.S109227. Larkin M, Thompson A. Interpretative phenomenological analysis. In: Qualitative Research Methods in Mental Health and Psychotherapy: A Guide for Students and Practitioners. 2012. Los Angeles: SAGE. https://doi.org/10. 1002/9781119973249. Holland AE, Mahal A, Hill CJ, et al. Home-based rehabilitation for COPD using minimal resources: a randomised, controlled equivalence trial. Thorax. 2017;72(1):57-65. https://doi.org/10.1136/thoraxjnl-2016-208514.
Melissa Rubio, PhD, FNP, is a visiting professor at Chamberlain University in Downer’s Grove, IL. She is available at [email protected]. In compliance with national ethical guidelines, the author reports no relationships with business or industry that would pose a conflict of interest. 1555-4155/18/$ see front matter © 2018 Elsevier Inc. All rights reserved. https://doi.org/10.1016/j.nurpra.2018.10.005
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