Background
Examining an MRI, a chest X-ray or a CT scan is an important part of the diagnostic and therapeutic workup in patients suspected of or diagnosed with lung cancer; medical management impacts on survival and quality of life [
1]. The concept “quality of life” refers to the views of patients themselves about the effects of their illness and its treatment on their functional status. In patients with lung cancer, the assessment of quality of life has reached an established status, with a reliable and valid set of methods to assess quality of life (e.g., [
2]). Integrating psychosocial care and palliative care into optimal medical management for patients with lung cancer is associated with a better quality of life, with some studies even suggesting greater longevity [
3].
Recently, research on illness perceptions has made clear how patients’ cognitions (beliefs, views) and emotions play a role in adapting (and maladapting) to illness (e.g., [
4]). Illness perceptions can be described as “a distinct, meaningfully integrated cognitive structure that encompasses (1) a belief in the relatedness of a variety of physiological and psychological functions, which may or may not be objectively accurate; (2) a cluster of sensations, symptoms, emotions and physical limitations in keeping with that belief; (3) a naïve theory about the mechanisms that underlie the relatedness of the elements identified in (2); and (4) implicit or explicit prescriptions for corrective action” [
5]. Early research on the topic illustrated how five dimensions can be discerned in illness perceptions: causes, consequences, control/cure, identity, and timeline [
6].
Research and clinical applications in the context of illness perceptions is conceptualized in the Common Sense Model (CSM) [
7]. A review of illness perceptions in patients with lung cancer concluded that illness perceptions are not only fascinating reflections of idiosyncratic views, they also predict psychological distress and reduced quality of life; the review pointed at the need for psychosocial intervention and support for patients with lung cancer and their caregivers [
8].
Assessing these perceptions is done usually with validated questionnaires [
9,
10]. Asking patients to draw their illness is a second approach to assessing illness perceptions (see [
11] for drawings of their lung cancer by afflicted patients and [
12] for a systematic review of drawing studies). There is a third, quite novel approach to studying patient’s views of their illness. The way an illness and its sufferers are depicted in
novels reveals how an illness is perceived, by healthy persons; by persons with the illness, their relatives, their caregivers, the health care professionals involved with providing medical care for these patients; and by society at large. “Medical Humanities” and “Literature in Medicine” are two concepts which cover this approach to studying illness perceptions; the recent concept “Health Humanities” reflects the growing influence of (health) psychology in this area.
Poems also reflect cognitions and emotions; a not insubstantial body of work is available on how various illnesses and the responses of their sufferers are represented in poems (e.g., [
13]). Furthermore,
films,
music, and
paintings are three additional art genres wherein illness and its many ramifications are represented, offering material for studying how patients, partners, physicians, and the public at large conceptualize illness and respond to its consequences.
Exploring illness perceptions in patients with lung cancer may help health care professionals to incorporate patient views into medical care, which may also impact positively on patients’ QOL [
14].
Results
Lung cancer is the subject of central concern in the
novels “The Quarry” by Iain Banks [
15], “In gratitude” by Jenny Diski [
16], “When breath becomes air” by Paul Kalanithi [
17], and “Stadium IV” (Stage IV) by Sander Kollaard [
18]. Two authors, who died because of lung cancer, wrote
poems about their ordeal: Raymond Carver (“What the doctor said” [
19]) and John Updike (“Needle biopsy” [
20]).
Two
films are highly relevant for the topic under discussion: “Thank you for smoking” (Reitman [
21]) and “The Lake” (Harding [
22]).
Two
music pieces were identified: Jacques Brel, a Belgian artist, died of lung cancer and wrote and sang “Growing old” [
23] about dying because of lung cancer. “Smoke! Smoke! Smoke! (That cigarette)” by Tex Williams [
24] reflects the craving for cigarettes and the potentially fatal consequences of smoking tobacco.
Paintings about lung cancer by established painters were hard to find; a search via Google produced a number of paintings of lung cancer done by patients.
The
graphic novel “Mom’s cancer” by Fies [
25] represents a mix of the two categories “novel” and “painting,” illustrating a recent new category in literature and medicine: graphic medicine (
http://www.graphicmedicine.org/).
Music
Music, classical and “popular,” is able to translate cognitions and emotions into sound, perceived as beautiful, attractive, or awful and repulsive [
29]. Illness is associated with strong emotions and cognitions. Lung cancer, therefore, also figures in music. Tex Williams sings in “Smoke smoke smoke that cigarette” (1947 [
24]) about the craving for cigarettes and its potential lethal consequences.
Smoke smoke smoke that cigarette (Tex Williams)
That ain’t that I don’t smoke myself
And I don’t reckon they’ll injure your health
I’ve smoked ‘em all my life and I ain’t dead yet
But nicotine slaves are all the same
At a pheasant party or a poker game
Everything’s gotta stop when they have that cigarette
Smoke smoke smoke that cigarette
Puff puff puff
And if you smoke yourself to death
Tell St Peter at the Golden Gate
That you hate to make him wait
But you just gotta have another cigarette
…
Jacques Brel, a Belgian artist, died as a consequence of lung cancer. His song “Vieillir” (1977 [
23]) reflects on “blond cigarettes” and “dying in a fight against cancer”:
…
Dying, laughing oneself to death
It is possibly true
By the way, just look –
They don’t dare laugh too much anymore
Dying from playing the fool
To cheer up the desert
Dying in a fight against cancer
Stopped by the referee
…
Dying at the end of a blond cigarette
Somewhere where nothing ever happens
Where time’s behind you
Where your bed turns into a grave
…
Both music pieces focus to quite some degree on smoking tobacco, while the novels and poems hardly mention smoking at all. The films discussed earlier appear to take a middle position in this respect. In all genres of art, the quotes presented here reflect a somewhat stronger emphasis on more or less an accepting and resigning response, which seems to translate into “personal control” and “consequences,” and “emotional illness perceptions.”
Music is being used in medical education in order to teach medical students about, for instance, suffering, mourning, and death [
28]. Cochrane reviews make clear that listening to music may have helpful effects in ill persons during diagnostic and therapeutic procedures and in living with a chronic illness [
29]. Pop music or country and western music, as is shown in the Cochrane review by Bradt et al., address smoking tobacco quite often. Classical music and opera deal with smoking and death as well—the opera Carmen has the main character working in a cigar factory, where the consequences of smoking tobacco become evident [
30]. Bro et al. recently reviewed the effects of music, specifically for people with cancer, as an adjunct to the biomedical treatments of the disease [
31].
Discussion
Lung cancer is the subject of novels, poems, films, music, and—to a limited extent—paintings. Given the prevalence of lung cancer, however, the size of literary and artistic work on this “recalcitrant disease” [
33] is limited (
www.medhum.med.nyu.edu).
Despite the relatively high incidence and prevalence of lung cancer, the disease is not often a subject in works of art. The stigmatized nature of lung cancer (“working class disease,” “patients cause their illness themselves by smoking,” “lung cancer is a grim, dirty disease”) seems not helpful in creating a sympathetic image of people with lung cancer or in stimulating the production of works of art about lung cancer (e.g., [
34]. An organization such as Pink Ribbon that raises awareness and creates moral support for (patients with) breast cancer does not exist for patients with lung cancer; a similar organization for people with lung cancer, and their relatives, might be very helpful in creating a less stigmatized image of (patients with) lung cancer.
The number of novels on cancer is very extensive. Our objective in this paper, however, is to focus specifically on lung cancer as represented in various art genres, given its status of “orphan disease,” both in behavioral research and art. Other categories of cancer, for example breast cancer or Hodgkin’s disease, have a more “popular, positive” image in society and in health care and behavioral research and art. This in itself is a rather interesting phenomenon but outside the scope of our paper. Our paper intends to explore lung cancer in novels, poems, films, music, and paintings. The books by Radley [
35,
36] are valuable sources of approaches to research on representations and images of persons with serious illness.
Not really surprising is how the novels—partly autobiographical—speak of the shock the authors or the protagonists experience when they learn of the diagnosis of lung cancer. At least as striking is the virtual absence of rage and anger as an initial psychological response. Resignation and withdrawal from the social world figure more prominently in the various representations of lung cancer in the art genres discussed here. Even the decision in “The Lake” by the protagonist and victim to “decide this by himself” can be seen as an expression of giving up resisting a fatal illness. The rage, verbalized by the character with lung cancer in “The Quarry” can be seen in a similar fashion.
Illness perceptions can be deduced from the artistic material albeit that further work is needed on the operationalization of illness perceptions in novels, poems, films, music, and painting [
37]. A theme in these studies is the degree to which illness characteristics (i.e., degree of concordance between severity of the disease and psychological consequences) are discernable in the novels. Our paper, we believe, is the first in the area of lung cancer.
In addition to the Common Sense Model (CSM), other theoretical frameworks also focus on how people make sense of illness. Illness narratives and narrative medicine are central concepts in the work of Charon, Frank, Kleinman, and Radley, representing theoretical approaches with a focus on medical ethics, medical sociology, psychiatry and medical anthropology, and social psychology, respectively [
36,
38‐
40]. In the current paper, we used the CSM as it has a strong empirical basis (see systematic reviews and meta-analyses by Dempster et al. [
41] and Hagger et al. [
42]), and it is the model that has guided our research over the past decades. Nevertheless, the Common Sense Model may benefit from additional research approaches. This is one of the factors that encouraged the current authors to examine the potential contribution of studying novels and other art genres to the subject of how people make sense of an illness (e.g. [
43]). Also, a recent work on drawings in illness attempts to extend the CSM: it studied whether patients’ drawings of their illness contribute to the CSM by identifying illness perceptions that may be underrepresented in the model and its assessment approaches [
12].
We selected four books where lung cancer is the central theme, albeit with different emphasis. Two of the four publications are novels proper (Banks; Kollaard), the other two (Diski; Kalanithi) might better qualify as autopathography or autobiography ([
44]; Radley uses the concept “victim art” [
35], p. 18). Given the quite limited number of novels on lung cancer and the high literary quality of the two chosen autopathographies, we believe these four books represent a valuable set of works to examine illness perceptions and illness narratives in people with lung cancer. Further research is warranted on the strengths and weaknesses of novels and autopathographies in research on illness narratives. Also, the topic is quite complex as even high-quality literary novels may be written by authors who suffered the illness that is central in the novel (e.g., Cancer Ward, Solzhenitsyn).
The Common Sense Model posits how illness perceptions affect coping and thereby outcome. The books we used in this paper illustrate this theoretical prediction. The protagonist in The Quarry “stopped smoking five years ago, about twenty years too late. He’s taken it up recently, reckoning there’s nothing left to lose, and also, I think, as an act of defiance” (Banks, p. 33). Here, perceptions of (a low degree of) personal control lead to changes in smoking behaviour. Diski illustrates how her perception of treatment control is associated with her decision to be unwilling to undergo various diagnostic and therapeutic procedures: “The cancer’s in charge and leading them all a merry dance. Perhaps that’s why I’ve so little taste for investigation. There’s an awful lot of uncertainty for patients and doctors in this cancer business” (page 118). Kalanithi, a physician, has strong perceptions of treatment control: “… stage IV lung cancer today was a disease whose story might be changing, like AIDS in the late 1980s: still a rapidly fatal illness but with emerging therapies that were, for the first time, providing years of life” (p. 139), which leads him to desperately embrace every option for medical treatment. Kollaard’s protagonist in “Stage IV” says: “For her cancer is a senseless, characterless fact, about which one simply cannot say anything meaningful, despite its shattering implications. She was going to die.” (p. 32)—this emotional giving up makes her decide to refrain from chemotherapy.
Illness perception research contributes to examining patients’ responses to an illness and to examining how exhibiting adaptive illness perceptions is instrumental in improving medical outcome. Clinically, various studies show how substituting maladaptive illness perceptions by adaptive illness perceptions results in, for example, earlier return to work, reduced symptoms, quicker resumption of sexual activities, and associated outcome measures [
45].
Modifying illness perceptions is a burgeoning field in (health) psychology. Recent reviews and meta-analyses make clear that addressing maladaptive illness perceptions may impact on coping and may modify outcomes in a positive way. Up to now, this research approach has not yet been applied to patients with lung cancer. Nevertheless, some encouraging research studies are available. Corbett et al. demonstrated—in a descriptive study—how illness perceptions in persons with lung cancer explained substantial variance in fatigue [
46]. The work by the research group of Temel focusing on palliative care for persons with lung cancer shows the potential contribution of addressing illness perceptions in this category of patients [
47]. The mindfulness intervention study seems to fit in with the work by Temel et al. [
48]. Given this empirical work, it appears that enhancing perceptions of personal control, coherence, and treatment control may translate into more adaptive coping, which may translate into a better QOL. Given the poor survival rates, outcomes of such interventions should not focus on (improvements in length of) survival but on issues such as quality of life. Monitoring quality of life may in itself even be associated with gains in survival (e.g. [
49]). Bouazza et al. offer a systematic review of patient-reported outcome measures for persons with lung cancer [
50]; Lehto reviews the area of psychosocial interventions in lung cancer [
51]. Encouraging findings from these studies appear to point at areas for future research.
The books, poems, music, and films discussed in this paper, of course, are case studies. Huge individual differences exist in the way people make sense of illness. Review papers give some impression of these variations—and communalities (e.g., [
8,
42,
43]). Future research might explore these issues by using a range of methods in studying how persons with lung cancer give meaning to their grim disease.
Interview and questionnaire methods do result in valuable insights into the patient’s world. In the current paper, we attempted to examine the potential contribution of some art genres to shed additional light on the patient’s world. In addition to interviews, questionnaires, and art genres, one may suggest a fourth strategy in (health psychology) methods to explore the patient’s world: drawings by patients of their illness [
12]. Reading novels and poems, studying paintings, and listening to music in the context of research on patients making sense of illness seems a worthwhile undertaking, if not alone for the intellectual pleasure this may bring. Enlarging the biomedical view (on lung cancer, but also much broader) to a biopsychosocial view by studying various genres of art may be instrumental in strengthening the quality and intellectual power of research—in any field. Furthermore, medical students, physicians-in-training, and other (health care) professionals may become better researchers and clinicians if they read novels and poems, watch films, and listen to music, related to health and illness; this might also be true for patients (see for a review of the area [
43]) suffering from a grim disease.