Receiving a diagnosis of inoperable lung cancer: Patients’ perspectives of how it affects their life situation and quality of life

Abstract

Lung cancer is a disease with many biomedical and psychological symptoms. The diagnosis and treatment of lung cancer induces adverse effects. Having an inoperable lung cancer there are few possibilities of being cured. Management of patients with inoperable disease is directed at relieving local or systemic symptoms. The purpose of this study is to describe how it affects the patients’ life situation and quality of life. Data was collected by qualitative interviews where the patient's lived experiences were articulated. Twenty-three Swedish patients diagnosed and starting palliative treatment for inoperable lung cancer were interviewed. The interviews were audio-taped and transcribed verbatim. Data were interpreted trough interpretive phenomenology. Six themes were identified that were important for the informants’ experience of their life situation and quality of life. The themes were: Experience of uncertainty; including time of waiting and thoughts, experience of hope; about a prolonged life, network as support; being treated as the person they are thoughts of death; is there time to conclude their lives?, feelings of shame and guilt; they have caused the disease by themselves and next of kin reactions; sadness, guilt, worries and anger. These six themes gave a structure presenting the essence: Living as usual. Maintaining independency and integrity were important, as well as maintaining status, being treated as the person they always had been and that they experience that they had a meaning to fulfill in life. They were living as usual.

The findings of this study point out the importance of improving the care of people afflicted with lung cancer, as well as promoting support for the next of kin, since they are significantly important for these patients’ experiences of quality of life. This knowledge and understanding will be useful for development of interventions and guidelines for treatment.

Lung cancer is the most common malignant disease worldwide and is the most common cause of cancer related death in males and in many countries it seems as the figures is increasing in females [1]. There are approximately 900 000 new cases each year in men and 330 000 in women [1]. In Sweden, approximately 3 000 new lung cancer cases are reported annually; the disease is decreasing in men but increasing in women [2]. The cause and risk factors for lung cancer are smoking, asbestos, radioactive gas such as radon and air pollution [1]. Lung cancer is a disease with many biomedical and psychological symptoms [3], [4], and there are few possibilities of being cured, especially with regard to inoperable lung cancer. Management of patients with inoperable disease is directed at relieving local or systemic symptoms. This treatment includes radiotherapy, chemotherapy and palliative systemic therapy. Prognosis remains poor even though treatment has been improved [5]. When cure is not attainable, the aim will be palliative treatment relieving symptoms and supplying good quality care [6]. It is important that the side-effects of the treatment will not exceed the desired outcomes of it and affect quality of life negatively [6]. Quality of life is what really means something in connection to palliative care and in order to evaluate different activities. There are several aspects to be concerned about, e.g. symptoms, symptom control, treatments and outcomes of treatments etc. The different caring activities are to be evaluated in terms of the patient's own experiences and estimation of his/her quality of life. Quality of life is complex and includes a variety of personal values. Quality of life definitions often include physical, psychological, social and spiritual aspects of function and well-being [7]. Quality of life is one of the most multidisciplinary concepts used nowadays, and that is why it is lacking concordance. When quality of life is operationalized to cover cancer patients, Cella and Tulsky [8] suggest that it should include physical concerns, functional ability, treatment satisfaction, occupational functioning, social functioning, future orientation, family well-being, sexuality/intimacy and spirituality. Cooley [9] means that quality of life is a subjective experience and a multidimensional construction. There will be an increased concordance if there are at least four main dimensions of quality of life related to health; functional status, physical symptoms, emotional and social function. Functional status means that the person is able to perform his daily activities. Functional status could be seen as first order, being able to perform basic activities such as eating, dressing, managing personal hygiene walking etc. Second order is that the person manages to perform activities inside as well as outside home such as cooking, cleaning, shopping, managing work etc. Physical symptoms include symptoms related to the disease or its treatment. Emotional function includes conditions with either negative or positive emotional feelings. The most studied areas of emotional function in cancer patients are anxiety and depression. Social function means that the person has the ability to retain a relationship with family and friends.

Quality of life is usually described as a multidimensional and individual concept which is difficult to measure [8], [10]. Ferrans [11] described quality of life as a person's sense of well-being that stems from satisfaction or dissatisfaction with the areas of life that are important to him/her. This description is grounded in biomedical and behavioural science categories including normal life, achievement of personal goals, social utility, natural capacity and happiness/satisfaction.

Instruments that measure quality of life do not permit the patient to choose what dimension or component will be estimated, so there will be estimation on dimensions which could be of low priority for the patient. Other methods could be used as a complement to these instruments or as separate analysis, and this will give a broader understanding of the patients’ quality of life. Since quality of life is a dynamic concept, qualitative research could be useful in order to study and understand patients’ experiences of a cancer diagnosis and its treatment and its effect on quality of life. This is one approach to studying patients afflicted with lung cancer and how it is to live with the disease [9].

The purpose of this study was to identify and describe how persons receiving a diagnosis of inoperable lung cancer experience its impact on their life situation and quality of life.

Methods

An interpretive Phenomenological approach influenced by Heidegger [12] was used in this study, in an attempt to understand the lived experience described by the persons diagnosed with an inoperable lung cancer. As human beings, we are living in the world and are a part of it; we are ‘being’ in the world. We express, interpret and understand our world by putting our experiences into words [12], [13]. Interpretation is the way in which understanding ‘develops itself’. To interpret is to understand something [12], [13].

In phenomenological research the question grows out of an intense interest in a specific topic and will to gaining a deeper understanding of human beings experiences. Within oncology, phenomenological approaches have been used to gain deeper understanding of patients’ altered sexual pattern, changed self-concept and patients communication needs [14], [15], and patients experiences of palliative care [16].

Recruitment

The participants were persons with inoperable lung cancer from two different hospitals in Southern Sweden. Selection criteria were (a) being an adult, i.e. older than 18 years of age (b) being diagnosed with an inoperable lung cancer, and an enquiry if the patient wished to participate in the study 6 to 7 weeks after diagnosis (c) the patient should be in palliative treatment; chemotherapy or/and radiation therapy (d) and be willing to share his/her lived experiences with us. Purposeful sampling was used, selecting patients for participation based on their particular knowledge of a phenomenon for the purpose of sharing that knowledge [17].

Approval from the Committee on Research Ethics was obtained (Reg.no. 02-191). An enquiry about participation in the interview study was given to the patients by the nurses in conjunction with the physician responsible at the lung reception at the hospitals. In this way, both oral and written information about the study was given to the patients. The patients were informed about confidentiality, how they were selected and the aim of the study. Signed informed consent was required prior to participation.

Participants

A total of 23 patients were approached and 23 accepted to participate. The characteristics of the patients participating in the study were: 12 males and 11 females, and they were aged between 36 and 86 years (median 67 years). Seventeen of 23 informants were married, four were single or divorced and two were widow/widower. Twenty of the informants had children.

Interview

Data were collected using qualitative interviews. Before the interview, there was some small talk to establish a more intimate relationship, after that there was talk about and reflection on the interview. Afterwards, the informants also noted on a scale, graded 1 to 10, how they estimated their quality of life to be at that moment.

A general interview guide approach was used [17]. A guiding question which each informant was asked is: Tell me about your lived experiences when being diagnosed with lung cancer and how this affects your life situation and quality of life. Topics related to the interview guide were raised spontaneously by the interviewer or the interviewee, and probe questions were asked to give the patient opportunities to elaborate and give examples of more general statements. The interviews were conducted at a place convenient to the patients. Some interviews were conducted at the patients’ homes, and some in a special room at the hospital. The interviews varied in length between 40 and 100 minutes, were audio-taped and transcribed verbatim.

Analysis

In this process, the spoken language comes to stand as text [12], [13]. Cohen et al., [18] and Moustakas [19] phenomenological hermeneutic approach was used for analysis. This form of interpretation is descriptions which in a way capture and mediate the lived experience from the informants. The analysis is performed in several steps:

(1) Every transcript was read and re-read and meaning units were thought of. This reading and re-reading aims to deepen oneself into data, in order to make a first interpretation that will run the analysis process forward. Meaning units are the characteristics found from the phenomenon under study.

(2) Each interview was read and re-read and data concerning the “lived experience” as a person diagnosed with lung cancer were underlined. With the aim of deepening the understanding of wholeness of data, as well as the parts, the transcripts were analysed in order to recognise patterns.

(3) The meaning units for each informant were described by statements. All meaning units identified as having equivalent meaning were grouped into a theme. A description and interpretation of each theme is written, aiming to clarify and describe the meaning of the theme with its basis from the meaning units. This was carried out for every single interview, over and over again. The statements under each theme were described in individual textural descriptions of the experience.

(4) From the individual textural description, a common textural-structural description, a so-called composite description was developed for each theme. This describes the meaning of the theme, representing the group as a whole.

(5) From the composite description of each theme, a major theme, the essence was constructed, giving the meaning and essence of the experience: Quality of life. The essence was representative of the group as a whole [18], [19].

Results

The analysis and interpretation from the statements in the transcribed interviews identified six themes and an essence, by interrelation of themes the structure of the phenomenon, the essence, became: Living as usual. The themes building this structure are: Experience of uncertainty, experience of hope, network as support, thoughts of death, feeling shame and guilt and next of kin reactions.

Experience of uncertainty

The informants expressed that the experience of uncertainty was hard to handle. All the questions regarding the diagnosis, the treatment and the outcome of the treatment were occupying the informants’ thoughts and bringing forth uncertainty. The informants experienced that too much time was spent in waiting; waiting for the diagnosis, living in fear and not knowing if there is a cure or not. Uncertainty was fortified. Then the diagnosis comes with even more worries and uncertainty and again more time spent waiting – for the treatment and its outcome. This uncertainty causes anxiety within the informants, which decreases their experience of quality of life.

“… there are a lot of thoughts all the time … what will happen … what will happen now … further on … do I have a future … that is something that worries me a lot … it is the hardest … today I am managing quiet well … but what will the situation be like in six months?” (I:5)

The time period between diagnosis and treatment was experienced, by the informants, as being too long and crucial for the treatment outcome. There were thoughts about that this waiting could have negative treatment effects or maybe there would be metastasis. The informants were thrown between hope and despair.

Experience of hope

Receiving a diagnosis of inoperable lung cancer is something terrible and shocking, but there is hope. They want to stay alive, so there must be a treatment or a cure. Life will go on if they as patients manage to cope with the treatment and all its side-effects. It is important that the side-effects not are too distressing. The informants need to feel that they have a sense of control over the situation, over their bodies and this will give a signal that they will manage and they experience hope.

“I look ahead, I have looked ahead all the time … that I will be cured … this is the attitude that I have always had … and it is fortified when I come here and they (physicians) show me the X-ray pictures … then you are … well, it helps you to look ahead …” (I:10)

Sometimes the informants experience the symptoms/side-effects of the treatment as being worse than the disease itself. If they manage the treatment, they will defeat the disease. Sometimes there is an uncertainty about the outcome, but there is hope. The treatment will prolong their lives. Hope is also about living a good life. The informants expressed wishes about a good quality of life; planning for different activities and hoping that they will have time to enjoy life and that they will not become distressed.

Network as support

All support is valuable but the support received by next of kin is significantly important for the informants. When receiving a cancer diagnosis, it is important to feel support; talking about the situation they are in and sharing feelings that arise. Almost all informants experienced this support, emotional support, as well as practical support at home and during other activities. Some of the informants went alone to get their diagnosis and to treatment or follow-up visits, but they expressed that it was important to inform their next of kin, even if it was hard. Sometimes the informants kept the bad news inside themselves, aiming to protect the next of kin or waited for the right moment to arrive, when it would be suitable to tell the next of kin.

“… but I usually do tell them everything, so we do not have any secrets so to say … I do say it as it is … she comes over here almost every day, take a look … if I tell her or call her to give me some help … they will all support me if they can “ (I:7)

Friends were appreciated as a network, but the informants did not tell them the bad things, instead they put on a mask of confidence and courage.

The health care professionals, and especially the nurses, were experienced as an important factor influencing how the period of disease and treatment was perceived. The nurses were accessible for conversation and support; at every visit or via contact by telephone. The nurses were also there as a support for the next of kin, and this was appreciated and highly valued by the informants. The informants felt the same regarding the physicians’ support. They felt that the physicians were skilled and had a lot of knowledge and experience of the disease, and they felt secure and confident in knowing that.

Thoughts of death

When the informants receive their diagnosis, their first thought is: A cancer diagnosis is equal to death. They have some difficulties in absorbing the information and after a while, depending on personality and support, they start to take action. This could be to put their fear of death into words; talking to next of kin about death and dying, and talking about practical things, such as their funeral. The informants also experience worries about their future. Is there time to conclude their lives and say goodbye to everybody and everything?

Others do experience thoughts of death, but do not want to put these thoughts into words; instead they think that there is plenty of time to make an adaptation.

“There are about 200 different kinds of cancer, people do not know that, so they think that cancer is equal to a death sentence, well it could be … but there is also the issue … for how long can you delay the process and still experience quality of life” (I:6)

All informants stated that they were not ready to leave life and there were a lot of things left to do. They wanted to take part in the development of the family, relationships with friends and being a part of normal life. They were not afraid of dying, but there was a sad feeling of leaving dear and near ones. There were also feelings of becoming a burden to their next of kin, if they did not manage to remain independent until death.

Feeling shame and guilt

The informants experienced that the diagnosis of lung cancer was, in society, in health care and in terms of the people around them, connected with shame and guilt. It was experienced that there was a negative attitude related to lung cancer. Talking to friends or next of kin about having a cancer diagnosis could be allowed, but a lung cancer diagnosis was something else. Some of the informants had been smokers, and others had been living with a smoker for many years. There were feelings of guilt that they had caused their disease, and that they were to blame themselves. Others were blaming themselves for not seeking help; waiting and hoping that their symptoms would disappear. There was a strong feeling of shame connected with this lung cancer diagnosis and sometimes the informants thought that even their next of kin would be stigmatized if people around knew about the lung cancer diagnosis.

“I do not think that I have the obligation to inform everybody about what kind of disease I have … I think that it is my affair … my and my family's affair (I:8)

Several of the informants meant that if nobody asked, they did not tell. Relationships with friends were hard to maintain, since they did not want them to understand what kind of cancer diagnosis they had, and they tried to cover up their symptoms and other bodily changes.

The informants’ social activities were limited due to these feelings of shame and guilt.

Next of kin reactions

The informants experience that their next of kin are significantly important regarding support, but, at the same time, they are very sensitive about the reactions of next of kin. They worry about how their children or elderly parents will react and manage, not only during this period of illness but also afterwards. The informants experience this as emotionally distressful.

“… it was worst for the children, I think, I thought that I would manage but now when I think about it I cry … and it was the same with my mother … I had to be angry with her … so she did not get depressed … well, she saw just a black hole” (I:3)

Sometimes the next of kin reacted more intensely and painfully than the informants themselves, and this was experienced as being distressing by the informants. The informants were continuously balancing the need to protect their next of kin, so they would manage through the period of disease and also after the informants had passed away, with their own needs of support, so they also would manage. Many thoughts and worries concerned next of kin and that there is a need to support them.

Living as usual

The essence, Living as usual, is by interrelation of themes the structure of the phenomenon, clarifying the experiences the informants had. Although there were a lot of different feelings/experiences, there was a clear message: we want to live as usual. The informants are very omitted in their new vulnerable situation; thrown between hope and despair. There are feelings of shame and guilt and they are in great need of support, while at the same time trying to support their next of kin. Even though next of kin and the family are significantly important for the informants’ quality of life, they are also a cause of worry and efforts in staying independent and strong. There is interplay between the informants and next of kin; they know that there is sorrow and emotional distress, but they are avoiding the issue and keep on living to live as usual. They all act as usual, carrying out their everyday activities. Several of the informants experienced it hard to ask for help and support from their next of kin and they also had a hard time admitting to themselves that they were seriously ill.

Maintaining independency and integrity was the guiding star for the informants, as they felt it to be strongly connected to their quality of life. It was important that the informants could maintain their status, being treated as the person they always had been and that they experience that they had a meaning to fulfill in life. They wanted to be valued and needed as the person they were and are. Everything should be as usual; they were living as usual.

“… making quite a lot of things that is quality of life for me … when I am doing things … that is quality of life … I feel that I am doing something … I am useful … it is important … the other well it is as usual (I:2)

It was important for the informants to take responsibility for their daily life, to be independent and manage to act. During the period of treatment, it was tremendously important that there were no side-effects that could in any way affect their independence or give some signals to friends or next of kin that everything is not as usual. Living as usual and acting as usual gave the informants a kind of control and feeling of security that fortified their experience of quality of life.

The results from the scale estimation

After the interviews, the informants were asked to estimate their quality of life at that particular moment, on a scale: 1 to 10 (Table I). The result shows that they estimated their quality of life at this moment as quite good, with a mean value between 6.3 to 6.8 and a median of 7.0. Only one of the informants did not manage to estimate a value for his quality of life. The estimations were quite similar between male and female informants.[JC1]

Table I.  Presentation of the estimated quality of life using a Visual Analogue Scale

Pat.	Gender	Estimated scale	Comments
1	Male	6	Perhaps …
2	Male	7–8	–
3	Female	7–	upper half, absolutely
4	Female	5–6	somewhere in the middle
5	Female	9–10	–
6	Female	7	–
7	Male	7–8	you always want it to be better
8	Male	6	I feel quite well, put it as a six
9	Male	7–8	something like …
10	Female	6	can not breathe smoothly, so
11	Male	5–6	about, ….
12	Female	7–8	I am surely on a …
13	Male	8	–
14	Male	5–6	–
15	Female	5	in the middle
16	Female	5	in the middle
17	Male	8	–
18	Female	5	–
19	Female	6–7	about, …
20	Male	9	–
21	Female	8	–
22	Male	–	Did not manage to estimate
23	Male	8–9	–

Discussion

Research approaches such as the one used in the present study, Heidegger's interpretive phenomenology, encourage the voicing of patients’ experiences and emphasizes understanding of the phenomenon, an understanding of the real world of these patients expressed in their own words [12], [13], [17].

The essence in our study is: Living as usual, which should give an understanding about what quality of life means to the informants. This essence could be seen as a narrow footbridge, where we have themes affecting quality of life positively on one side: Experience of hope, and supporting network. On the other side of the footbridge are themes affecting quality of life negatively, such as experiencing uncertainty, thoughts of death, feeling shame and guilt and the reactions of next of kin. The informants then need to balance on this narrow footbridge, in order to experience quality of life or as they expressed it: Living as usual. If they are trying to live as usual, they will maintain their ordinary way of life and their life situation will thus be changed as little as possible. Maintaining a normal life means for the informants not saddling others nearby and not showing how ill they are. Not being able to manage by themselves made them feel dependent, and this was hard for them to accept. This finding is in accordance with the results from Sarna's [20] study, describing disturbance in quality of life in women with lung cancer. The most common disturbances were difficulties in performing housekeeping but also worries about being able to take care of themselves. Elderly patients seem to be ambivalent in their attitude towards social support, since this could make them feel hampered in their independency [21]. Confirmation of these findings can also be found in the study by Luoma and Hakamies- Blomqvist [22], which showed that limitations in physical function bring about an increased dependency on others, which in turns leads to decreased autonomy. This leads to changes in life style and an impact on the patient's social function leading to isolation.

The informants in the present study expressed the importance of doing things as before, as usual. It was important to function in daily life with their family, workmates and friends. It was significant to live as usual and be active; they had plans for a future, no matter if the future was short or long. Factors that affect increased hope are living a normal life [23], [24] and experiencing a meaningful life and performing some kind of creative work [25]. Maintaining a normal life; Living as usual was confirmed in the study by Gray et al., [26] and Luoma and Hakamies-Blomqvist [22].

Experiencing hope is an important factor when talking about quality of life. The most significant experience expressed by the informants regarding hope was the possibility of cure or improvement. Even though the informants deep inside themselves did understand that their chances of being cured were minimal, there was hope connected to the treatments offered to them. Confidence in treatment has in several studies shown to be an important factor regarding the level of hope [23], [24]. Luoma and Hakamies-Blomqvist [22] study pointed out that the most significant source of hope was treatment; hence not to complete a treatment was to lose hope or to give up. The informants in our study had great confidence in chemotherapy but also hope that there will be new drugs offered or that alternative treatments could be presented. There is always hope for a new drug or treatment in those patients with a cancer diagnosis, even though there is an intellectual understanding and emotional feeling that the life remaining is short. Hope is an important factor in managing one's life situation.

Support and encouragement will enhance quality of life and facilitate the informants’ ability to cope with their new life situation, in order to decrease uncertainty about the disease and to improve quality of life. The informants in our study talked about their network of supporting people but they had difficulties in asking for help and in becoming dependent upon others. This due to that the informants sometimes feeling that they had to protect or support their next of kin, in order to maintain their own status. A study by Maliski et al. [27] showed that the family was an important source of support, both emotionally and through supplying aid. Patients that experience positive social support will more easily handle disease related stress, have less anxiety and depression and a better adaptation, including survival time [28].

Even though, there is hope and support from people around the informants, there are thoughts about death. The patients are preoccupied with these thoughts and questions and it is difficult to take in information and understand it. In our study, all informants had been informed about and were aware of the severity of their disease and there were thoughts of death, but they had hope and belief in a future. They expressed a longing for and desire to keep on living. Could this be interpreted as repressing the seriousness of the disease? In a study by The et al. [29] the findings show that lung cancer patients in the early stage of treatment show false optimism. Should this be seen as maintaining hope?

The informants experience themselves as hanging in uncertainty during investigation and treatment. There is an uncertainty about the future, with a number of questions remaining unanswered. This is in conformity with what Germino et al. [30] states, that uncertainty is an important stress factor for patients with life threatening diseases, such as cancer. This result is also supported by Wallace [31], who found significant correlations between uncertainty, anguish and a feeling of being exposed to danger and this affected emotional quality of life.

The informants narrated that they had gone for quite a while with their symptoms before seeking help, and it became shocking when they received their diagnosis, even though some of them experienced relief. This finding is also shown in a study by Yardley et al. [32] there the patients had various reactions, when receiving their diagnosis, from shock to relief to overcomeness. Receiving the cancer diagnosis was experienced by the informants in our study as painful, uncertain and relieving.

The cancer disease did decrease the social life of the informants. Contacts with friends changed for various reasons. The informants did not want to bother their friends with their worries. Similar findings have been presented in a study by Gray et al. [26], where the cancer diagnosis was shown to have a negative psychosocial effect on the patients, causing some downheartedness and several practical and relationship related changes. It should be mentioned that our informants expressed a feeling of shame and guilt, which affects social life. Since the lung cancer diagnosis was attitudinal connected to smoking and bad habits, several of the informants choose to avoid telling friends and others about their diagnosis. They tried to escape their bad feelings and continue as normal, and wanted to be treated as usual. This is in accordance with the study by Gray et al [26] about men with prostate cancer. Furthermore, Yardly et al.'s [32] study of lung cancer patients gives examples of not telling family members or friends, since they do not want to worry them or it is not their business.

In a study by Hill et al. [33], patients with newly diagnosed lung cancer had to value factors that affected them. Most significant was the disease itself, the future in relation to the disease and their worries about their family. So, in order for quality of life not to be negatively affected, it is important that the next of kin are doing well, as pointed out by the informants in our study.

Conclusion and perspectives

The findings of this study point out the importance of improving the care of people afflicted with lung cancer, as well as promoting support for their next of kin, since next of kin are of significant importance for these patients’ experiences of quality of life. Experiences of hope, as well as supporting network are affecting the patients positively. As health care professionals we have the opportunity to maintain hope in the patient, without giving unrealistic expectations. Supporting network could be activated by supporting the next of kin. Experiencing uncertainty, thoughts of death, feeling shame and guilt and the reactions of next of kin did affect the patients negatively. As health care professionals we have opportunities to reduce uncertainty and feelings of guilt by giving clear information, give the patient time to ask and to talk about the disease. This could also mitigate the thoughts of death. If we support the next of kin, give them clear information and make them involved, we could reduce these negative aspects and facilitate the patient and the next of kin to go on living ‘as usual. The patients are striving for and trying to live as usual, in order to maintain quality of life. This knowledge and understanding will be useful for the development of interventions and guidelines for treatment.

Acknowledgements

We would like to thank all patients who participated in the interviews. We are also grateful to the Medical Research Council of Southeast Sweden (FORSS) and Gunnar Nilsson's Cancer foundation for making this study feasible through financial support. Many thanks also to Susan Barclay Öhman for providing English language revision.