Open Access Research

BMJ Open: first published as 10.1136/bmjopen-2016-011555 on 8 December 2016. Downloaded from http://bmjopen.bmj.com/ on March 14, 2024 by guest. Protected by copyright.
Meaning of living with severe chronic
obstructive lung disease: a qualitative
study
Gabriella Marx,1 Maximilian Nasse,1 Henrikje Stanze,1,2 Sonja Owusu Boakye,1
Friedemann Nauck,1 Nils Schneider2

To cite: Marx G, Nasse M, ABSTRACT

Stanze H, et al. Meaning of Strengths and limitations of this study
Objectives: To explore what it means for patients to
living with severe chronic
live with chronic obstructive pulmonary disease ▪ The narrative approach for data collection and
obstructive lung disease: a
qualitative study. BMJ Open
(COPD) as an incurable and constantly progressing analysis enabled the reconstruction of an
2016;6:e011555. disease. in-depth view of individual experiences using
doi:10.1136/bmjopen-2016- Design: Qualitative longitudinal study using narrative grounded theory and provided new insights into
011555 and semistructured interviews. This paper presents details of the relevant subject of end-of-life care.
findings of the initial interviews. Analysis using ▪ Conducting most of the interviews at the partici-
▸ Prepublication history and grounded theory. pants’ homes made it possible to get a deeper
additional material is Setting: Lung care clinics and community care in insight into their home and life situation, which
available. To view please visit Lower Saxony, Germany. was a valuable addition for data analysis, as it
the journal (http://dx.doi.org/ Participants: 17 patients with advanced-stage COPD enriched the material and enabled a better under-
10.1136/bmjopen-2016- (Global Initiative for Chronic Obstructive Lung Disease standing of the data collected.
011555). (GOLD) III/IV). ▪ Recruitment turned out to be difficult and led to
Findings: Analysis shows that these patients have a rather heterogeneous range of physical
difficulties accepting their life situation and feel at the distress.
Received 23 April 2016
mercy of the disease, which could be identified as a ▪ Study results are based on a sample of patients
Revised 1 November 2016
core-experienced phenomenon. Over a long period of living in the middle of Germany. Therefore,
Accepted 2 November 2016
time, patients have only a vague feeling of being ill, patients’ experiences in other German regions
caused by uncertain knowledge, slow progress and might be different in some aspects.
doubtful attribution of clinical symptoms of the disease ▪ In order to help patients cope with their illness
(causal conditions). As an action strategy, patients try and to address their psychosocial needs, provid-
to maintain daily routines for as long as possible after ing multiprofessional palliative care early in the
diagnosis. Both effective standard and rescue disease trajectory might be appropriate.
medication, which helps to reduce breathlessness and
other symptoms, and the feeling of being faced with
one’s own responsibility (intervening conditions) BACKGROUND
support this strategy, whereby patients’ own The increasing prevalence and mortality
responsibility is too painful to acknowledge. As a
of chronic obstructive pulmonary disease
consequence, patients try to deny the threat to life for
(COPD) is of high relevance, as this disease
a long period of time. Frequently, they need to
experience facing their own limits, often in the form of is expected to become the third leading
an acute crisis, to realise their health situation. The cause of death in 2030 worldwide.1 In
experience of the illness is contextualised by a Germany, 3% of all deaths are caused by
continuous increase in limited mobility and social COPD,2 whereby the estimated prevalence is
isolation. about 10–15%.3 COPD is defined as ‘a pre-
Conclusion: In order to help patients to improve ventable and treatable disease with some sig-
1
disease awareness, to accept their life situation and to nificant extrapulmonary effects that may
Department of Palliative improve their reduced quality of life, patients may
Medicine, University Medical
contribute to the severity in individual
benefit from the early integration of palliative care (PC), patients’.4 Usually, the duration of the
Center Göttingen, Germany
2
Institute for General
considering its multiprofessional patient-centred and disease covers many years or sometimes
Practice, Hannover Medical team-centred approach. Psychological support and
decades, and even a progressive stage may
School, Germany volunteer work, which are relevant aspects of PC,
continue for months or years and differs
should be appropriate to address psychosocial needs.
Correspondence to More research is needed to evaluate how patients between patients. The main common symp-
Dr Gabriella Marx; gabriella. could benefit from early PC. toms are breathlessness, wheezing, chest
marx@med.uni-goettingen.de tightness and chronic ( productive) cough.4

Marx G, et al. BMJ Open 2016;6:e011555. doi:10.1136/bmjopen-2016-011555 1

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On a population level, the disease trajectory of COPD of the study is described in detail elsewhere,20 only the
is characterised by ‘long-term limitations with intermit- main aspects are briefly outlined in this paper. Over a
tent serious episodes’.5 More specifically, Bausewein period of 12 months, four serial semistructured inter-
et al6 described four trajectories of breathlessness: fluctu- views were conducted with patients four-monthly (t0–t3).
ating, increasing, stable and decreasing trajectories, ‘of In this paper, we present the findings of initial interviews
which fluctuation was the most common’. The current (t0). At this point, participants were first asked to tell
clinical view is that COPD is accompanied by ‘increasing their illness story using narrative interview techniques.
frequency and severity of crises over time’.7 Each of these Additionally, an interview guide was used to address
exacerbations can lead to death, but in many cases do issues that were not been mentioned by the interviewee.
not; therefore, the end-of-life period, or the onset of the For details of the interview guide, see the published
final phase, is uncertain and difficult to predict; more- study protocol.20
over, patients themselves experience their illness and life The study was guided by the principles of grounded
story as chaotic, with ‘no clear beginning’.8 For this theory introduced by Glaser and Strauss21 and further
reason, death from COPD is often experienced as a developed by Strauss and Corbin.22 These principles are:
sudden event. This clinical uncertainty, and patients’ (1) data collection and analysis as inter-related pro-
recurring recovery, has the effect that COPD is unpredict- cesses, (2) the researcher as part of the process, where
able and, especially at an advanced stage, must be seen as his or her view on the data needs to be reflected, (3)
a tremendous challenge for patients as well as relatives, constant comparative analysis, that is, findings are
family carers and healthcare providers, that is, doctors, repeatedly compared with previous concepts and cat-
nurses, physiotherapists, social workers, etc. Moreover, egories (in this process, ‘concepts are grouped to form
the psychological and physical burden of the disease categories’, which are ‘higher level, more abstract con-
differs between patients with COPD, and it is now cepts’23) and (4) sampling on theoretical grounds (ie, as
accepted that the burden of the disease goes beyond a an ongoing process on the basis of current find-
purely pulmonary dysfunction.9 Against this background, ings).21 23 24 Grounded theory as a methodical approach
the focus has shifted to COPD-related aspects of daily life means ‘learning something new about a topic and devel-
besides medical treatment, such as quality of life or the oping a theory’.24 In other words, developing data-based
effect of physiotherapy on deep breathing.9 10 theoretical explanations (a conceptual framework) of
It is known that patients suffering from progressive social and psychosocial phenomena and processes in
COPD have poor physical, social and emotional function- order to try to understand them.23 25
ing.11–16 Nevertheless, specialised palliative care (PC), Regarding demographic variables (age, sex, social
with its multiprofessional and patient-centred focus, does status, rural residency), we initially used a purposive sam-
not yet seem to be common for these patients until now, pling strategy, but during the process we attempted to
as some studies have shown.17–19 In the light of the pro- follow a theoretical sampling strategy consistently in
spective growth in patient population, outpatient treat- order to reach a saturated sample with regard to the
ment and home care in particular need to be adapted theory we aimed to develop.21 Inclusion criteria were:
within the individual context. In order to provide appro- diagnosed COPD stage III/IV according to the Global
priate healthcare throughout the illness trajectory, but Initiative for Chronic Obstructive Lung Disease
especially at an advanced stage of the disease, knowledge (GOLD), 20104 breathlessness at rest or under slight
about individual needs is required. In this paper, we physical activity, frequent hospitalisation because of
present the partial findings of phase 1 of a comprehen- acute bronchopulmonary infection or breathlessness,
sive study conducted in Lower Saxony, Germany, entitled ability to give informed consent and to participate in an
‘Understanding the Needs and Perspectives of Patients interview in the German language.
with Incurable Pulmonary Disease at the End of Life and
their Relatives: a Qualitative Longitudinal Study’ (for Data collection
details, see study protocol).20 To achieve a deeper insight GM (sociologist, highly experienced in interviewing)
on this subject, it is necessary to understand the patients’ and MN (medical student, trained by GM) conducted
illness experiences and related needs. Therefore, this qualitative face-to-face interviews with patients at their
study aimed to explore what it means to live with COPD home, during hospital stay or at our clinic, according to
as an incurable and constantly progressing disease. By the patient’s preference. None of them was involved in
developing a theory of experiencing COPD, we further the care provided to the patients. The interviewers did
tried to describe and understand how single phenomena, not provide participants with any personal information.
which could be reconstructed from the patients’ perspec- Relatives were not explicitly invited to be present, but if
tives, are intertwined. both the patient and the relative agreed, relatives’
attendance and narratives were possible. No questions
METHODS addressing the relatives’ perspective had been prepared
Design/sampling in advance. In the initial interviews, participants were
To get a deeper insight into patients’ experiences, a encouraged to tell their illness story from the occur-
qualitative study design is appropriate. Since the design rence of first symptoms until the present. After these

2 Marx G, et al. BMJ Open 2016;6:e011555. doi:10.1136/bmjopen-2016-011555

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present our findings referring to this coding paradigm.
Table 1 Characteristics of 18 patients with COPD who
Data were analysed using MAXQDA. A professional
gave an initial interview (t0)
translator translated the passages of the interviews cited
Number of
in this paper.
patients
Sex (male/female) 10/7
Age (range) 54–78 Ethics approval
Housing situation (living together with…) All participants had been informed about the study
Solitary 9 details and written informed consent was obtained from
Spouse/life partner 6 all participants prior to the interview. Consent included,
Child 1 among others, the option to withdraw from the study at
Informal carer 1 any time without giving reasons. To protect participants’
Currently involved professionals confidentiality, interviews were transcribed and analysed
Pulmonologist (outpatient) 13 using pseudonyms.
Pulmonologist (inpatient) 1
General physician 17
Cardiology (outpatient) 2
Ambulatory specialised palliative care team 1 FINDINGS
(physicians and nurses) Sample
Nursing service 1 In total, 31 patients who fulfilled the inclusion criteria
Level of care were invited and willing to take part in the study, of
None 9 whom 18 finally agreed to give the interviews. The main
Level 1 6 reason for refusal was the feeling of being overwhelmed
Level 2 1 by the thought of four interviews over a period of
Do not know 1 12 months. Ten participants were included during a hos-
pital stay because of an acute crisis; eight were recruited
at a meeting of a COPD support group. Initial interviews
narratives were finished, immanent open-ended ques- lasted about 90 min each. Two interviews were con-
tions were asked to generate further illness narratives. ducted at the specialist hospital, two at the research div-
The additional interview guide, a modified version of ision, while the others took place, at the patient’s
the guide developed by Pinnock et al8 was used and request, at their home. Only two of them wanted a rela-
focused on care-related issues such as daily practical tive to be at their side; in one interview, the patient’s
experiences, current problems, communication/infor- spouse was present, and in another the patient’s daugh-
mation needs and suggestions/wishes. No repeat inter- ter. The latter explained some of the patient’s narratives,
views were carried out. Interviews were audiotaped and which were systematically taken into account during
transcribed verbatim (transcription convention as online the interpretative analysis process, as they helped to
supplementary data); since we used abductive reasoning better understand the patient’s perspective. In all other
for data analysis, we decided that transcripts should not cases, no other person was involved. One participant
be returned to participants. Field notes (eg, interviewer’s proved to be not eligible, because of less severe symp-
first interpretations, which had been verified or falsified toms. This participant was excluded afterwards, so that
during the abductive analysis process, impressions of the our final sample comprises 17 participants at baseline
patient’s living situation, or characteristics of the inter- (t0). Table 1 shows their characteristics to describe the
view situation) were made during and after the interview sample; figure 1 shows the flow chart of sampling.
and were used to enrich data analysis.
Categories
Data analysis Feeling of being at the mercy of the disease
Interviews were analysed in German, using all steps of During the constant comparative analysis process using
the grounded theory analysis process: open coding, grounded theory, the feeling of being at the mercy of
selective coding and axial coding, whereby open coding the disease emerged from the data and could be
and selective coding were conducted in an iterative described as core phenomenon when asking what it
process. Codes were developed open-mindedly by GM, means to live with advanced COPD. Apparently, the
MN, HS and SOB using abductive reasoning26 and dis- main reason for this is a diffuse feeling of being ill
cussed within the research team. The coding paradigm because of slow progress. Patients with COPD feel faced
developed by Strauss and Corbin22 was used to structure with their responsibility and have to cope with social iso-
the analysis process. Aspects of this paradigm are: causal lation. As a main strategy, they try to maintain daily life
conditions, which lead to the core phenomenon, attri- as usual, with the consequence of denying the threat to
butes of the context of the phenomenon, additional inter- life for as long as possible. The categories and their con-
vening conditions, action strategies to handle the nections are shown in figure 2 (for details of the coding
phenomenon and consequences of actions.27 28 We will tree, see online supplementary file).

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Figure 1 Flow chart of
sampling.

Uncertainty about disease severity What I didn’t expect was that this disease is not curable
Analysis revealed that patients have limited knowledge […] I thought well, try hard and you’ll manage it, but
about the definition, the cause, the process and the not a bit of it, it’s not the case […] but as it’s there, yes
incurability of COPD. Apparently, physicians were not now it’s there now I must try to accept it, (3) I’m about
to do so, (3) yes, (5) and hope that I’ll get it soon…
able to inform them sufficiently, that is, in a way that is
(CO-01w, female, 71 years).
understandable to the patients. Therefore, patients
interpret the course of the disease and their disease situ- Patients suffering from COPD obviously experience
ation on their own and, as a result of denial, tend to the feeling of a premature decline, which cannot be
minimise its severity. They also alleviate clinical symp- influenced and could be worked out during the analysis
toms such as short periods of breathlessness or decreas- process as a core phenomenon of experiencing COPD
ing physical capability, and adapt their daily activities. (feeling of being at the mercy of the disease, see above).
Slow progress, as well as repeating phases of recovery,
leads to a sense of hope that they can someday live their
life as usual. ‘Usual’ in this context means as it was Trying to maintain daily life as usual
before the last crisis, or even before the COPD diagno- The main action strategy for patients in coping with the
sis. This uncertainty (vague feeling of being ill) may disease-related life situation is to try to maintain normal
foster the experience of living with COPD as ‘having a daily life for as long as possible. The sense of daily ‘nor-
disease’, that is, a feeling of being tainted with some- mality’ is obviously an appropriate way to cope with help-
thing that is not a part of their being, but instead some- lessness when faced with the feeling of being at the
thing separate from them. mercy of the disease. Analysis showed that in the case of

Figure 2 Grounded theory of

what it means to live with
advanced chronic obstructive
pulmonary disease.

4 Marx G, et al. BMJ Open 2016;6:e011555. doi:10.1136/bmjopen-2016-011555

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phased well-being, or when sitting and relaxing, patients experienced as a tremendous psychological burden that
tend to minimise the threat and, simultaneously, hope must be played down or disproved by the patients.
to recover. ‘Normality’ is strongly associated with the During the interviews, participants stated their own
need for independence and the avoidance of medical disease concepts and explanations (eg, severe bronchitis
aids to provide functionality (eg, walker, wheelchair) as in their childhood) or other causes (eg, toxic exposure
well as nursing care. As if to demonstrate the absence of in their jobs).
their disease, patients tend to go to their physical limits
until ‘nothing works anymore’. Naw, I think=I, I=don’t have asthma, the weather doesn’t
bother me at all //mmm// instead the lack of air, the
At first I didn’t take any of it all that seriously ((sniffle)) lung //mmm// is so restricted by the scars from my
(3) until last year, when nothing more was possible… childhood //mmm// em, so that=it just can’t be
(CO-03m, male, 60 years) managed anymore…(CO-09m, male, 78 years)

Owing to this strategy, most of our study participants And then I thought you’re stupid, you should have
narrated that they have remained in employment until worked with a mask or something […] and that was, that
they were forced to quit after a severe crisis at a very was the reason I imagine, so it was all the dust I breathe
in […] it’s just the same with asphalt, I drove on asphalt,
much advanced level of their disease. It seems that living
now the next slump comes from driving on asphalt, so
with COPD is too notional to allow one to feel the dis- whenever I buggered up I got something serious, eh
ease’s progress. Though they experience progress in //mmm// it’s just the same when you spend 10 hours on
attacks, these are followed by phases of recovery. the machine and you breathe in all the vapours all the
However, at an advanced stage of COPD, patients time, it’s clear that that can’t be healthy […] but this gov-
depend on help from other persons, as was true for all ernment says or its trade association says it’s smoking, the
study participants. In all cases, this support was provided doctor says that too, ‘cause it’s a good excuse…(CO-07m,
by relatives, some of them in the legal position of infor- male, 54 years)
mal caregivers, that is, they received reimbursement
from the nursing care insurance fund (Pflegekasse) However, it seems that the possibility to maintain a
according to the respective level of care. daily routine enables patients to deny or at least to
weaken their responsibility for the cause of the disease.
Effective medication and feeling faced with one’s own
responsibility Deny the threat to life for as long as possible
Two intervening conditions could be revealed, which As a consequence of patients’ attempts to continue daily
can facilitate and support the action strategies described life as usual, they aim to deny the threat to life for as
above: effective medication (symptom control) and long as possible. The fact that the COPD trajectory is
patients’ feeling of being faced with one’s own responsibility characterised by sporadic serious episodes followed by
concerning the cause of COPD. Although we did not recovery to just a little below the previous health status
ask participants about their medication, all of them makes it easier to deny the degree and progress of the
talked about positive experiences with their regular or disease.
rescue medication, as well as recovery by hospital care
after an acute crisis. The use of physiotherapy and You forget the disease, when you feel so well…(CO-1w,
oxygen were seen as helpful interventions; none of them female, 71 years)
had serious therapy-related complaints. This conveyed
the feeling of being healthy or at least not seriously ill. In the postcrisis situation, patients continue to hope
Even oxygen, if required, was adapted to everyday that they will reach at least the health status they had
actions. However, the medical advancements support the before the crisis, for example, to go to the toilet or to
patients’ need to maintain normal life for a long time. climb stairs without help, to go for a long walk, or to go
Since they rate their own health status on the basis of on holidays, depending on the individual disease pro-
daily activities, patients denied the severity of the disease gress. The fact of gradual aggravation, that is, limited
by accepting changes in their daily life and nevertheless mobility, physical complaints, the necessity of daily
evaluating their daily life as ‘normal’. support, or the need for affection and attention, in turn
facilitates the slowness of perceiving and accepting the
Well, everything got a bit slower and, naturally //mmm// threat of the disease. It seems as if a serious crisis is
the stairs also got harder to climb, the garden no longer needed to face one’s own health situation and the
got dug in two hours either, I needed a bit longer for it illness progress, which was phrased by the informants as
//mmm// it was all normal…(CO-01w, female, 71 years) reaching one’s own limits, or ‘nothing more’ being
‘possible’.
Physicians obviously confront their patients with the
fact that smoking is the main cause for developing At first I didn’t take any of it all that seriously ((sniffles))
COPD. Hence, patients who were smokers felt especially (3) until last year, when nothing more was possible…
responsible for their current health status, which is (CO-03m, male, 60 years)

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Against this background, talking about PC was experi- So the spontaneity to simply say […] let’s just go away for
enced as talking about a speedy end to life and thus the weekend no it all has to be organised the oxygen has
strongly rejected by patients, whereby experiences were to be organised and there’s a whole slew of other things
extremely heterogeneous. It seems that interim clinical that we have to take with us […] and=and=and all sorts
of things (2) yes, the=restrictions to the quality of life in
PC was either not addressed by physicians or even com-
some cases I can’t even take part in family celebrations…
municated with negative advice. Patients showed a nega-
(CO-28w, female, 58 years)
tive attitude, as they compared PC with hospice care,
thus assuming sudden death. On this basis, social isolation increases. Former activities
with friends are no longer possible, the consequence
IP: I got wise to that only when I was lying there that they
being that either friends, or the patients themselves,
just leave us lying there and then when I saw the file with
Palliative it all became clear because that’s just how they
withdraw from sociality. Some of them feel stigmatised
were acting. because of the visibility of the disease and the helpless
reaction of their environment.
I: so what became clear? As long as patients do not need permanent oxygen,
driving seems to be the only possibility to go outside at
IP: that I had only been sent there to die…(CO-09m, all. Once they need oxygen, the oxygen tank limits the
male, 78 years) time frame, so that driving must be planned precisely.
From that date, daily activities such as going to the hair-
And then he came [the doctor] (here with palliative) dresser, shopping for daily necessities, or seeing the
and he said if I wanted his advice I should stay with my doctor are difficult to realise, if at all.
wife for as long as possible . in terms of life or in terms
of help . as soon as a third person [a health carer] joins
in- and that’s why these tablets- I was prescribed them DISCUSSION
[…] and I still have the tablets and she said Mr L. as
This study explores the perspectives and needs of
soon as you notice that you are feeling better […] then
we can first reduce them and then cease them and my
patients suffering from progressive COPD, and therefore
fear is that if I go down that route that I will need outside provides new insights into details of the relevant subject
help […] but palliative care is the last path or the last of end-of-life care. Using a narrative approach for data
step before death…(CO-02m, male, 72 years) collection and analysis, with a main focus on gathering
and analysing the unaffected patient perspective, it was
However, the only patient who had previously received possible to reconstruct the individual experiences given
PC told of very positive experiences. in the interviews. This was possible because the infor-
mants were willing to talk frankly and in detail about
And palliative service- they are still coming around they their life and feelings during the inquiry period.
came just yesterday- […] and asked if anything was wrong Recruitment turned out to be more difficult than antici-
and look after me well I must say […] I can always talk pated. Although all participants met the inclusion cri-
about my distress and my worries then and they have-
teria, the range of physical distress was rather
somehow they always have a good idea, and then it
works- it [the washbasin] is placed in the bed and that
heterogeneous. However, this gave us the possibility to
works out really well…(CO-01w, female, 71 years) better understand illness experiences at an earlier stage
of advanced COPD. Thus, for example, the relevance
and connection of mobility and social isolation could be
described as a relevant context that has an increasing
Limited opportunity for action and social isolation influence on the core illness experience (being at the
The increasing breathlessness and subsequent need for mercy of the disease) and the resulting action strategy
oxygen generates a feeling of being at the mercy of the (try to maintain daily life as usual) over time. By con-
disease and at least of one’s own body, as it limits the ducting most of the interviews at the participants’
opportunity for action. From the time when oxygen is homes, they also afforded an insight into their home
needed, it determines movements with increasing and life situation, a valuable addition for data analysis, as
restriction; initially, movements outside the home are it enriched the material and enabled a better under-
affected; subsequently, movements at home also are standing of the data collected. Study results are based
determined by oxygen supply. on a sample of patients living in the middle of Germany.
Therefore, patients’ experiences in other German
I can’t do anything anymore I have a- now from the hos-
regions might be different in some aspects.
pital I now have a wheelchair (2) bu- of course I don’t
The study shows that patients with advanced COPD
use it, I certainly don’t use it here in the village because I
don’t go around there at all now anymore I never did so find it difficult to accept their life-threatening situation
if if we go anywhere we drive somewhere else […] (2) and feel at the mercy of the disease (core-experienced
few kilometres with the car […] where I can pack my phenomenon). Over a long period of time, patients
oxygen device in my wheelchair”…(CO-05w, female, have only a vague feeling of being ill, which is caused by
57 years) uncertain knowledge, slow progress and the doubtful

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attribution of clinical symptoms of the disease, for ex- prevention and relief of suffering by means of early
ample, shortness of breath, acute crisis (causal condi- identification and impeccable assessment and treatment
tions). As an action strategy, patients try to maintain daily of pain and other problems, physical, psychosocial and
life for as long as possible compared with the time before spiritual’.32 Among others, PC integrates ‘the psycho-
diagnosis. Both effective medication, which helps to logical and spiritual aspects of patient care’, ‘uses a team
reduce breathlessness, and the feeling of being faced approach to address the needs of patients and their fam-
with one’s own responsibility for the cause of the illness ilies’, and ‘will enhance quality of life, and may also posi-
(intervening conditions) support this strategy, whereby tively influence the course of illness’.33 With regard to
the second is too painful to acknowledge. As a consequence, the findings of this study, this means that the patient-
patients try to deny the threat to life for a long period of centred and team-centred approaches could help to
time. They often need the experience of facing their own better inform patients about the progress of the disease,
limits to realise their health situation. The illness experi- which data show to be lacking. It might further help to
ence is contextualised by a continuous increase of limited better understand and accept the life situation, and the
opportunity for action and social isolation. resulting feeling of a hopeless situation, described in our
According to the patients’ experiences, current findings as the feeling of being at the mercy of the
medical COPD standard treatment and rescue medica- disease. Psychosocial support could help to solve the
tion appears to be appropriate and realisable in daily question of responsibility and may influence the patients’
life and, as a result, from the patients’ perspective there action strategies in a positive manner, that is, to try to live
seems to be no need to improve existing therapies. daily life in accordance with their physical capacities. As
Moreover, the high degree of effectiveness experienced shown in a review by Burbeck et al,34 in some cases, for
enables patients to maintain daily life and work-related example, the loss of social life and/or isolation, volunteer
as well as social participation over a long period of time, work, which is a relevant aspect of psychosocial support
with only moderate aggravation, until a sudden turning in PC, may be sufficient to compensate these needs and
point of physical inability. COPD is defined as ‘a prevent- may mediate between patient and doctors, carers or
able and treatable disease with some significant extrapul- therapists. It must be assumed that support from volun-
monary effects that may contribute to the severity in teers, as an aspect of early integration, might enhance or
individual patients’.4 Together with the effective medica- maintain psychosocial well-being (eg, reducing isolation),
tion experienced, in particular the preventable and and perhaps also physical well-being (eg, reducing symp-
treatable aspects of COPD given in this definition might toms) as aspects of quality of life. The experiences of our
hinder patients’ instant acceptance of the disease as a study suggest that the possibility to talk to a non-medical
severe and life-limiting condition. Instead, it may foster person about one’s own concerns (in an interview) may
patients’ questions about the individual cause of the already strengthen this aspect. We know from the litera-
disease and lead to patients developing their own ture that volunteers carry out various activities, such as
disease concepts. In line with the findings of our study, giving emotional care to patients and their families,
Disler et al29 showed that at the progressive stage of the sharing a hobby, or assisting with social outings.35 It has
disease, patients feel both increasing physical burden been shown that their work may have a positive impact
and social isolation, which are known as the basis for on relatives’ well-being 36 and that terminally ill patients
decreasing psychological and social well-being. Social who received volunteer support had a prolonged sur-
isolation that contextualises illness experiences as a vival.37 The fact that volunteers define their role in social
main aspect is a result of shameful breathlessness, as terms suggests a possibility to form relationships with
described by Gysels and Higginson,30 as well as also of respect to individual needs.34 Against this background, it
the reduced range of motion, which in turn depends on seems reasonable to assume that volunteers might
the range of portable oxygen tanks and their low practic- further help patients to accept their life situation, the
ability. As is known, the illness progress is very slow and disease progress and the incurability of the disease
characterised by gradual decline,5 31 which means that without them necessarily having to see professionals
the changing health situation can be adapted into daily (social worker, psychologist).
routines for many years.
Although none of the participants believe that he or
she will recover, this might be a reason why it is difficult CONCLUSION
for current patients at a progressive stage to face the life- Early integration of PC in the case of COPD might
limiting aspect of COPD. However, living with advanced imply providing support after a severe turning point
COPD means being confronted with tremendous limita- within the course of the disease, which must be identi-
tions regarding the health-related quality of life. fied individually. Further research is needed to evalu-
Findings strongly suggest that patients may benefit from ate how patients could benefit from the early
the early integration of PC as usual practice. The WHO integration of PC in general, and from volunteer work
defines PC as ‘an approach that improves the quality of in particular.
life of patients and their families facing the problem Acknowledgements The authors thank all participating patients for being part
associated with life-threatening illness, through the of the study and for talking frankly about their experiences and feelings.

Marx G, et al. BMJ Open 2016;6:e011555. doi:10.1136/bmjopen-2016-011555 7

 Open Access

BMJ Open: first published as 10.1136/bmjopen-2016-011555 on 8 December 2016. Downloaded from http://bmjopen.bmj.com/ on March 14, 2024 by guest. Protected by copyright.
Further, the authors would like to thank Marie-Luise Dierks for her methodical 11. Gärtner J, Simon S, Voltz R. Palliativmedizin und fortgeschrittene,
advice in the proposal, as well as Tobias Welte and Carl-Peter Criée for nicht heilbare Erkrankungen. Internist 2011;52:20–7.
facilitating field access to the patients. We acknowledge support by the 12. Gore JM, Brophy CJ, Greenstone MA. How well do we care for
patients with end stage chronic obstructive pulmonary disease
German Research Foundation and the Open Access Publication Funds of the (COPD)? A comparison of palliative care and quality of life in COPD
Göttingen University. and lung cancer. Thorax 55:1000–6.
13. Edmonds P, Karlsen S, Khan S, et al. A comparison of the palliative
Contributors NS (director of the department of general practice, Hannover
care needs of patients dying from chronic respiratory diseases and
Medical School) was principal investigator of the study and led the study lung cancer. Palliat Med 2001;15:287–95.
design and supervised the research process. FN (director of the department of 14. Habraken JM, van der Wal WM, ter Riet G, et al. Health-related
palliative medicine, University Medical Center Göttingen) was co-investigator quality of life and functional status in end-stage COPD: a longitudinal
of the study and co-designed the study. GM (PhD, research associate) and HS study. Eur Respir J 2011;37:280–8.
(Dip, research associate) prepared the interview guide, recruitment and data 15. Gysels MH, Higginson IJ. The lived experience of breathlessness
and its implications for care: a qualitative comparison in cancer,
collection. GM and MN (doctoral candidate) interviewed the participants. GM, COPD, heart failure and MND. BMC Palliat Care 2011;10:15.
MN, HS and SOB (MA, research associate) conducted the analysis and 16. Weingaertner V, Scheve C, Gerdes V, et al. Breathlessness,
repeatedly discussed the findings. GM wrote the first draft. All authors functional status, distress and palliative care needs over time in
critically reviewed and approved the final version. patients with advanced chronic obstructive pulmonary disease or
lung cancer: a cohort study. J Pain Symptom Manage
Funding This study was supported by the Ministry of Science and Culture in 2014;48:569–81.e1.
Lower Saxony, Germany, grant number 74ZN1079. 17. Gysels M, Higginson IJ. The experience of breathlessness: the
social course of chronic obstructive pulmonary disease. J Pain
Competing interests None declared. Symptom Manage 2010;39:555–63.
18. Bausewein C, Booth S, Gysels M, et al. Understanding
Ethics approval The study received approval from the Ethics Committees of breathlessness: cross-sectional comparison of symptom burden and
Hannover Medical School (registration number 5896) and University Medical palliative care needs in chronic obstructive pulmonary disease and
Centre Göttingen (registration number 19/11/12). cancer. J Palliat Med 2010;13:1109–18.
19. Goodridge D, Lawson J, Duggleby W, et al. Health care utilization of
Provenance and peer review Not commissioned; externally peer reviewed. patients with chronic obstructive pulmonary disease and lung cancer
in the last 12 months of life. Respir Med 2008;102:885–91.
Data sharing statement No additional data are available.
20. Marx G, Stanze H, Nauck F, Schneider N. Understanding the Needs
Open Access This is an Open Access article distributed in accordance with and Perspectives of Patients with Incurable Pulmonary Disease at
the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, the End of Life and their Relatives: Protocol of a Qualitative
Longitudinal Study. J Palliat Care Med 2014;4:177.
which permits others to distribute, remix, adapt, build upon this work non- 21. Glaser BG, Strauss AL. The discovery of grounded theory strategies
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creativecommons.org/licenses/by-nc/4.0/ theory procedures and techniques. Newbury Park, CA: Sage
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