Lived experiences of life with newly diagnosed advanced cancer – a qualitative interview study

ABSTRACT

Background

Incurable cancer significantly affects an individual’s life, requiering comprehensive palliative care (PC). With early PC now recommended but poorly integrated, it is essential to address patients’ experiences and concerns to ensure successful early PC integration.

Aim:

This study aims to investigate the experiences of life in the initial period following a diagnosis of incurable cancer to inform early PC integration.

Methodology

The study employed a phenomenological hermeneutical framework, drawing inspiration from interpretive descriptive methodology. Thirteen participants diagnosed with incurable cancer were purposively recruited. Data were generated through semi-structured, in-depth interviews exploring patients’ experiences of lived life, their needs and wishes. Data analysis followed an iterative process of constant comparison and thematic development.

Results

One main theme was identified throughout the analysis: Standing still in the storm. Three sub-themes were identified reflecting varying manifestations innhow doing so, and navigating their challenging circumstances. peace: 1) The urge to take action, 2) Clarity and awakening in the face of reality, and 3) Changed self-perception. As their understanding of their illness deepened, the patients experienced a shift towards reconciliation.

Conclusion

The experiences of patients living with incurable cancer reveal a complex interplay of psychological, emotional, and existential responses. It is essential that healthcare professionals address existential concerns within clinical care. By acknowledging and supporting patients’ existential struggles, discussions about sensitive topics becomes more natural and better recieved by the patients. .

1. Background

Being diagnosed with incurable cancer represents an unanticipated life event that challenges an individual’s existence. It is well-documented that patients with incurable cancer experience a broad spectrum of unsupported needs, encompassing physical, social, psychological, emotional, spiritual, informational, and practical domains (Cuthbert et al., 2020). Often, the support by healthcare professionals (HCPs) tend to focus mainly on the disease, the objective body, and practical problems (van Gurp et al., 2020). Commonly, they fail to systematically address the illness, the body as lived, and what matters most to the patients; how they feel, what they experience and how the illness changes their lives (Carel, 2011; Henoch & Danielson, 2009). Confidential and informal conversations between patients and nurses on these topics frequently occur naturally during other nursing activities under appropriate circumstances (Stenman et al., 2023). The information, however, is not shared in a collaborative care setting.

When diagnosed with incurable cancer, palliative care (PC) in a holistic and patient-centred manner aims to address the many issues arising for the patient to maintain a perceived quality of life (World Health Organization, 2020). Initially, the patients often perceive PC negatively, associating it with end-of-life care, diminished care options, and reduced hope, leading to sub-optimal support by the HCP (Collins et al., 2017; McIlfatrick et al., 2014). Still, PC is a valuable form of care. Randomized controlled trials have demonstrated that early integration of specialized PC can enhance quality of life, reduce acute hospital admissions, minimize aggressive cancer treatments and offer survival benefits, along with increased patient involvement compared to standard care (Bakitas et al., 2009; Temel et al., 2010; Zimmermann et al., 2014). Consequently, professional organizations now advocate for early access to PC, preferably within eight weeks of diagnosis (Jordan et al., 2018; Kaasa et al., 2018).

Most patients do not have a complex symptom burden requiring specialized PC (Sundhedsstyrelsen, 2023). The care can be provided by all healthcare professionals within their routine duties to patients with life-limiting diseases (Dictionary, 2012). This means that oncologists and especially general practitioners are in a position to provide PC from the initial phase as advocated for (Sundhedsstyrelsen, 2023; World Health Organization, 2018). A review investigating models of early PC integrated between oncologists and general practitioners suggested that the integration of basic PC requires much more attention to fulfil its intended purpose (Swenne et al., 2024). Most often, the tested models with an intended systematic approach does not take into account the experiences of the patients but rather focus on how it works within the system. Furthermore, early PC, characterized by proactive engagement of the patient, differs significantly from late PC (Dhollander et al., 2018).

Based on the healthcare system’s transition towards a more person-centred approach, there is a growing interest in investigating how patients with incurable cancer experience their illness. The integration of Early PC is recommended to take place close to the time of diagnosis, but little is known about the lived experiences of life in this period. Therefore, to successfully integrate early PC, it is imperative to understand and address patients’ lived experiences at this specific time.

1.1. Aim

The aim of this study was to investigate the lived experiences of patients in the initial phase of incurable cancer. The paper provides a knowledge base for early integration of basic, person-oriented PC in clinical practice.

2. Materials and methods

Our methodological approach is grounded in the phenomenology-hermeneutical tradition, as we seek to describe, understand and interpret human experiences in a deep and meaningful way (Frederik et al., 2018; Lindseth & Norberg, 2004). According to the phenomenological philosophy, reality is what is subjectively lived and experienced. The philosophy seeks to investigate the universal features of consciousness by setting aside preconceived notions or biases, aiming to describe the essence of a phenomenon as it appears to the subject and to explore the meaning and significance of the lived experiences (Brinkmann et al., 2020; Collin et al., 2014). Also, we recognize the importance of interpretation and that all understanding is inherently interpretive and situated within a context as described within the hermeneutic tradition. This includes our pre-understanding, e.g., presuppositions of reality in relation to the narratives (Frederik et al., 2018; Lindseth & Norberg, 2004). As researchers we are affected by our knowledge about PC being associated with multiple positive effects and by our practice with patients being grateful for the many possibilities of PC. Therefore, by bracketing our pre-understanding we endeavour to remain open-minded and non-judgemental towards patients’ experiences while using our pre-understanding to expand and renew our comprehension when challenged (Lindseth & Norberg, 2004).

The process is guided by a generic qualitative framework using Interpretive Description (ID) as developed by Thorne (Thorne et al., 1997). The ID was selected due to its suitability for clinical and exploratory studies investigating complex experiential healthcare questions in order to lead us to clear implications for clinical practice (Handberg et al., 2021; Thorne et al., 1997).

This study is reported according to the COREQ checklist for interviews and focus groups (Tong et al., 2007).

2.1. Participants and setting

Patients with incurable cancer were included in the study 8–15 weeks after biopsy-verified diagnosis. The study population comprised adults at the Department of Oncology, Vejle Hospital aged ≥18 years. The ability to speak Danish and cognitive well-functioning were requirements for participation. Patients were purposefully selected to ensure theoretical variation in diagnosis, gender, age, and social status, aiming to capture a diverse range of insider perspectives. Patients referred for special palliative care were not eligible.

The first author approached eligible patients during treatment at the outpatient clinic. Patients who agreed to participate were included based on written and orally informed consent. Two patients declined, with frailty considered the main reason. The sample size was deemed sufficient when theoretical diversity was obtained and no new insights emerged. Given the sensitive nature of the topic and the shared experience of cancer (Andersen et al., 2019), participants were given the option to invite a relative to join the interview. We anticipated that familiar surroundings would make the patient feel comfortable and help recall lived experiences of significance. Therefore, the interviews preferably took place in the participants’ homes.

The study included 13 participants (8 women and 5 men) aged 37 to 82 years representing six types of cancer. Five participants were interviewed together with a relative present. See Table 1 for patient characteristics.

Table 1.

Population characteristics.

ID	Age	Sex	Organ of primary tumor	Recurrence (R) Primary disseminated (PD)	Weeks from final diagnosis to interview	Length of interview	Participating relative
Pilot 1	55	K	Lung	PD	8	93 min	Spouse
Pilot 2	67	K	Lung + Bile duct	PD	9	52 min	-
P1	82	M	Lung	PD	14	58 min	-
P2	69	M	Colon	R	14	119 min	Spouse
P3	63	K	Pancreas (previously uterus)	PD	15	94 min	Spouse
P4	46	M	Colon	PD	16	116 min	-
P5	73	K	Uterus	R	8	76 min	-
P6	66	K	Lung+Colon (previously thyroid)	R	10	95 min	Spouse
P7	81	M	Prostate	R	9	87 min	Spouse
P8	59	K	Breast	R	9	126 min	-
P9	74	M	Prostate	PD	10	49 min	-
P10	70	K	Breast	PD	16	59 min	-
P11	37	K	Breast	R	13	116 min	-

2.2. Data generation – qualitative interviews

Data were generated through qualitative interviews using a semi-structured interview guide (Appendix 1). The initial questions of the interview were designed to capture:

1. Patients’ experiences of life with a newly diagnosed incurable cancer.

2. What is most important to the patient’s to experience a good quality of life and well-being in the early palliative phase.

3. How patients envision the healthcare system’s participation in their palliative care journey.

To refine the interview guide, it was pilot-tested with two participants, who also confirmed the feasibility of the study and the interviewer’s ability to perform interviews. The pilot interviews did not result in substantial changes. All interviews were conducted by the first author, who has experience in discussing sensitive matters with cancer patients. To ensure the capture of patients’ lived experiences first and last author continuously discussed and reflected on how to stay open-minded towards patient expressions during the interviews. All interviews were audio recorded.

Thirteen interviews, including two pilot interviews, were performed between April 2023 and January 2024. They lasted between 49 minutes and 126 minutes. All interviews were included in the data set.

The data generated in the pilot-interviews demonstrated consistent quality and focus, aligning well with the findings from subsequent interviews. These pilot interviews proved to be valuable and relevant to the research questions, reinforcing patterns observed in the main dataset without compromising the quality or depth for the data. Moreover, the inclusion of the two pilot participants enhanced the diversity of the participant sample.

2.3. Data analysis

The analysis followed the four phases according of the ID methodology, (Handberg et al., 2021; Thorn et al., 2004, Figure 1). Concurrent data generation and analysis was performed throughout the study in an iterative process. In the first phase, interviews were transcribed verbatim by the first author using NVivo (Release 14.23.2, QSR International) and Kahubi (Research Write et al., 2023). In the second phase, the interviews were repeatedly read to facilitate a general impression of the participants’ experiences. In the third phase, constant comparative techniques were employed to restructure data by coding, sorting, comparing and categorizing them, which led to the identification of themes. In the final phase, the main message and themes were extracted and elaborated upon.

Figure 1.

A model of the analysis process inspired by interpretative description [24, 27].

The process was continually supported and discussed with the second and last authors. The research group further discussed, nuanced and refined the themes in a workshop. As the ID acknowledges the researcher interacting with the phenomena under investigation in order to interpret its meaning and character, the first author also brought the preliminary results back to her clinical work and continued to read other researchers’ accounts in the empirical literature in order to produce sound, valid and usable knowledge (Thorne et al., 1997).

2.4. Ethical considerations

The study was approved by the Danish Data Protection Agency through the Region of Southern Denmark [22/13339]. Approval of the Committee on Health Research Ethics was not required [20222000–52]. The study was congruent with the tenets of the Declaration of Helsinki (World Medical Association, 2022). Hence, each participant was informed about the aim of the study and the right to withdraw without any consequences for their future treatment. Written and orally informed consent was obtained from all participants.

The patients in this study were considered vulnerable due to their advanced cancer. Therefore, effort was made to perform interviews where the patients were most at ease and at their preferred time of the day. Participation of a relative in the interviews was encouraged to make the patients feel comfortable and to achieve a comprehensive description of their experiences. The participants had the right to decline answering specific questions and also to pause or withdraw from the interview. If the interviewer sensed reluctance or discomfort, she would remind the participants of these options. By engaging in continuous reflexivity and situational ethics, she was able to navigate sensitive topics, e.g., by openly and respectfully exploring whether participants had talked to others about their painful experiences. It would give her a sense of whether some degree of processing had taken place or if she was treading on entirely uncharted territory. This is valuable information for the continued interview.

3. Results

An overall theme was identified in the analysis of participants’ experiences of living with incurable cancer: Standing still in the storm. Before getting ill, the participants had an everyday life, which they referred to as normal, feeling safe and with inner peace. Upon diagnosed with incurable cancer, the participants experienced changes to the normal and well-known. They were abruptly uprooted and forced to confront a new reality, where a struggle and effort to return to their familiar sense of normalcy gradually shaped a new normal. Three sub-themes reflected manifestations of how the participants stood still in the storm by navigating challenging circumstances, including being thrown around without any sense of control towards the feeling of peace and safety through reconciliation. This process was reflected in three sub-themes: 1) The urge to take action and being responsible, 2) Clarity and awakening in the face of reality, and 3) Changed self-perception.

The strategies employed to navigate the situation and stand still in the storm evolved over time. Initially, upon receiving the diagnosis, the “fight or flight” stress response was activated, prompting the participants to explore every possible means of regaining control. Factors such as a primary disseminated illness, severe prognosis, younger age, and strong support from networks increased the feeling of having something at stake and therefore amplified the intensity of the stress response. As the participants deepened their understanding of their illness and adjusted to their new circumstances, their approach became more nuanced and a reconciliation evolved over time as illustrated in Table 2.

Table 2.

Interviewing patients with newly diagnosed incurable cancer revealed three phases from fighting, to self-consciousness and reconciliation. The phases are exemplified by quotes from the three subthemes.

	The urge to take action and be responsible	Clarity and awakening in the face of reality	Changed self-perception
Phase 1	Doing everything possible.“There was no talk about anything else (than accepting oncology treatment). I wanted to do everything I could. Everything I have to do, I will do it. Even if it hurts. So it’s not even an option to say no, to give up. It’s not.” (P8)	Struggles with the meaning of life, fear and doubt. “In the beginning, I woke up many nights and just cried with all kinds of thoughts running through my mind. What about my children? Am I going to die if I get a fever when taking those chemo-pills?” (Pilot 1)	Who am I? “I know I talk a lot about work. But that is just who I am. My identity. I have been working outside for the last 25 years. So it’s really hard to sit here and think that I need to wear a big hat and sun screen and that I’m not allowed to go out and sit directly in the sun and things like that.” (P4)
Phase 2	Becoming more self-conscious and doing what is experienced as good for oneself. “They are prescribed to me with the assumption that it’s something I need. But I have also asked several times, Do I need keep taking this?’” (P2) “Quality of life for me is not being sick for five to eight days after treatment. That’s what I told them, ‘I can’t do this’. I shouldn’t be at home lying on the couch for five days where I can hardly do anything at all. So we ended with adjusting the treatment” (P4)	Fluctuating between hope and doubt. “Ritt Bjerregaard was actually a bright example for me in this regard, because she had chemotherapy for many years. Well, if I could have 10 more years like she did, I would be happy. Other days I’ve felt down thinking it’s all pointless and it doesn’t matter if all I’m going to do is sit here doing nothing” (Pilot 2)	Learning to know one-self “Sometimes I’m a bit afraid that I’m overlooking something because I’ve become so used to everything being strange… So I’m practicing telling my husband what I feel because he sometimes gets a bit startled when he finds out that I’ve been dealing with something for days because I just think, ‘Oh, it’s nothing.’ But I don’t know how to avoid this. I think it’s just become a way for my brain to cope, to shut off some of these things, otherwise … ” (P11)
Phase 3	Focusing on what you can do something about and reconciling with what you cannot control. “It’s not very pleasant. But I can’t change the facts. So we’ve agreed to take it one day at a time and make the best of it.” (P3)	Reconciliation with what life has given. Focusing on the present, gratitude and holding on to hope. “I’ve developed a different attitude towards life. It has fallen into place in my mind… I have to be able to live with the cancer without it disturbing me. The cancer should not come first all the time. I don’t want that. And it shouldn’t be that way… I think there is sometimes a meaning to it.” (P6)	Reconciliation with a changed version of oneself. “My physique won’t get back to what it was. It will be on a different level, which I’ll have to adjust to. I can do that” (P7)

3.1. The urge to take action and being responsible

Upon receiving a diagnosis of incurable cancer, participants exhibited a strong compulsion to take proactive steps as a means of managing their emotions of uncertainty, anxiety, guilt, and fear. Engaging in concrete, practical tasks provided a sense of control and stability amidst the overwhelming nature of their condition. One participant emphasized, “It is not because I’m pushing the illness away and don’t care. It just shouldn’t fill my life. I don’t want that” (P6). This reflects a broader sentiment among participants who sought to maintain their normality with daily routines and resist the encroachment of illness into their lives. When settling with the diagnosis and knowing how to act and what to do, the participants did not feel or see themselves as deadly ill, and therefore their daily life should also reflect that.

Not taking responsibility or doing something was seen as giving up. The determination to do everything possible, even endure discomfort, to optimize their chances of survival was a resolute mindset for the patients. They therefore eagerly pursued oncology treatment without hesitation: “There was no talk about anything else (than accepting oncology treatment). I wanted to do everything I could. Everything I have to do, I will do it. Even if it hurts. So it’s not even an option to say no, to give up. It’s not.” (P8)

Participants noted that the routine and structure provided by oncology treatments helped reduce uncertainty and fostered a sense of familiarity. Over time, as they adjusted to their treatments and discovered that immediate death was not imminent, many experienced a shift from initial despair to renewed hope and increased life-courage. For example, a participant described, ”The whole system is overwhelming. You quickly get into a rhythm as if it’s the rhythm that dictates you. It can be quite reassuring” (P2).

Participants strived to adapt and maintain a feeling of being capable of doing something on their own. It included reflecting on what feels meaningful to do and finding new ways to engage in daily and cherished activities despite physical limitations. The burden, however, of constant responsibility and decision-making could be overwhelming, leading to feelings of guilt and hopelessness. For example, one participant living alone expressed, ”I really need to rest and just sleep. I feel like there’s always something to consider” (P5).

Taking responsibility is not only a matter of personal agency for patients but also an expression of love, grief, respect and a sense of injustice. A woman with an aggressive cancer really wanted to relieve her husband of the burden on his shoulder. They agreed to put their house out for sale despite her severe loss of physical function. “The decision (to sell) was made, but not that it would happen so quickly. If we are lucky, we can manage to move into a new home together, rather than… him being completely alone with everything. It’s also… well, this is a huge old house, so there’s a lot of maintenance, and I can’t contribute much. Even though a day has 24 hours, and my husband has retired, there is too much for him.” (P3)

Doing something could also include seeking the company of others to be diverted from heavy thoughts. Contact with others diagnosed with incurable cancer could help alleviate a feeling of existential loneliness, which was experienced by the participants as adding weight to their burden. A young woman with breast cancer talked about how meeting another patient in a similar situation helped relieve that feeling; “I feel a bit less alone, I think. I mean, because other people can’t really understand what it’s like. But talking to someone who just knows exactly what I mean, that’s really nice. So, I’m happy to talk with her.” (P11).

3.2. Clarity and awakening in the face of reality

Confronted with their diagnosis, the participants underwent a process of re-evaluation, recognizing the transient nature of life. Questioning the meaning of life and justice were themes occupying the participants’ thoughts in the beginning. Over time, a newfound clarity evolved and led them to prioritize meaningful relationships and activities, finding joy and significance in previously overlooked aspects of life. It fostered resilience, although it could strain relationships specifically for those who struggled to understand or accept this shift in outlook. As one participant reflected, “I don’t like to say that I am incurably ill because I don’t actually believe that myself. But it’s the combination of knowing what’s happening and choosing to live my own life. People must accept me as I am. For me, it quickly turned around. For me, it’s just them who have a problem. I think it’s them who need to talk to someone” (P4).

Having reconciled with circumstances offered by life, it was crucial for sustained life courage to maintain hope in an unpredictable future. However, before reaching that point, the participants were challenged by feelings fluctuating between hope and doubt influenced by both internal and external factors undermining their sense of control and affecting their sense of vulnerability. Their strive for hope and increased awareness of living in the present made it challenging for the participants to engage in proactive discussions about the future, and it gave them a feeling of wanting to give up. Such discussions were often postponed as noted by one participant with aggressive cancer; ”There are some decisions my husband and I have needed to make for a long time. Not because I am sick, actually. Just in general, in case something happens to either of us. But now, when I am in this situation proceeding with it gives me a feeling of giving up and being defeated.” (P8).

3.3. Changed self-perception

The diagnosis of incurable cancer profoundly affected participants’ self-perception and sense of identity. Their body awareness increased. Many struggled with the disconnection between their internal experience of not feeling ill and their own and others’ expectations of being ill. Accepting the diagnosis was easier when there was a linkage between the bodily sensation and the cognitive understanding and expectations.

Change of appearance, e.g., caused by anorexia or hair loss, and significant functional decline associated with cancer dominated the prejudged experience of identity loss. The expectations and fear of a changed appearance made the participants pay attention to bodily sensations. They found it difficult to distinguish between symptoms related to cancer and those unrelated, leading to a heightened sense of responsibility to monitor their condition closely. As one participant described, ”It is a process, that thing about just needing to feel oneself, to tune in. But I like that I can tell the oncologist what I feel.” (P4). Still, misinterpretation and ignored symptoms was common and contributed to a misunderstanding of the severity of the disease.

Maintaining normality and continuing social roles and activities provided participants with a sense of control over their identity, helping them preserve hope and dignity. Accepting some degree of physical loss was tolerable as long as it did not significantly impinge on perceived autonomy. For example, a participant reflecting on his reduced physical capacity stated, ”It won’t get back to what it was. It will be on a different level, which I’ll have to adjust to. I can do that” (P7).

The prospect of losing cognitive and mental capacities was closely linked to fear of losing identity and dignity. Some participants expressed a preference for ending their lives if they were unable to contribute meaningfully to their families, indicating a desire to avoid being a burden, and not being able to feel as themselves. One participant with pancreatic cancer remarked, “Can’t they just hook me up to a machine to keep me pain-free and get it over with so the rest of the family can move on with their lives” (P3).

4. Discussion

To our knowledge, this is the first study investigating lived experiences in the first period following a diagnosis of incurable cancer. Our findings indicate that participants faced profound disruption and uncertainty, yet navigated their new circumstances by taking decisive action, reassessing their lives, and transforming their self-perception. These strategies facilitated a sense of stability and resilience amidst the turmoil of a diagnosis, which also helped them move towards a reconciliation of their new situation. Despite the severe diagnosis it was a common experience among the participants that they did not feel ill, which added to their struggle towards reconciling with the situation.

Dalgaard conceptualizes an incurable cancer diagnosis as a transitional state, wherein death and life are simultaneously present in the foreground (Dalgaard, 2007). This aligns with our overall theme, depicting participants standing at a crossroads where doubt and despair exist side by side with hope. They experienced profound existential tension with an immediate focus to choose life despite the looming presence of death. The participants’ experience of not feeling or looking ill contributed to their chosen direction of life, which is also is confirmed by Dalgaard who concludes that primarily the bodily sensations are decisive for the direction (Dalgaard, 2007).

Delmar’s exploration of achieving “harmony with oneself” in the context of chronic illness offers a relevant framework to understand the strategies employed, that evolved over time, to navigate the situation and stand still in the storm (Delmar et al., 2005). Delmar defines it as the acceptance of and reconciliation with oneself and one’s life circumstances. Reconciliation, according to Kelman, is both a process and an outcome, which is confirmed by our findings. The process involves modifying motivations, beliefs, and attitudes, and three phases are linked to the resolution; 1) the agreement to end the conflict; 2) coexistence; and 3) the period of establishment of peace (Kelman, 2004). Similar to findings by others (Renz et al., 2020), we further found that when facing mortality, this process and the many decisions are internalized and unconsciously present, coming from within and just “occurring” over time.

The presence of life phenomena such as uncertainty, doubt, guilt and anxiety, all of which are imposed by a diagnosis of incurable cancer, is widely recognized (Dalgaard, 2007; Delmar et al., 2005; Stie et al., 2020). In our participants these constraining feelings became prominent from the start, reflected in impaired quality-of-life and well-being. Life phenomena constitute a generalized label for various existential and ethical phenomena given by life itself (Delmar, 2006). In the present study, constraining and enabling life phenomena arose side by side. For example, doubt was followed by hope as an expression of wishing for a longer life, and loneliness comes with love as an expression of not wanting to disconnect from life and loved ones.

According to Pahuus, the life phenomena life happiness and spirit of life/life courage produces the whole person and gives life its full meaning. The individual has an urge to act from within and manage one’s own living condition in order to change the one given and fuel one’s vitality (Pahuus & Livsmod, 2019). This may explain why doing something was an immediate necessity for the patients in our study. Likewise, it is consistent with the study by Dalgaard, which reports that “doing everything possible to get the most out of life” is a life phenomenon rooted in life courage and vitality (Dalgaard, 2007).

As suggested by Heidegger, having to confront one’s mortality could be interpreted as an existential feeling of homelessness, which occurs when moving away from the “taken for granted” securities of the familiar “at-homeness” (Todres & Galvin, 2010). Although facing the “not being at home” is an anxiety-provoking experience, it can open up a path of movement towards development of resilience, which can provide an energizing potential that in itself can be felt as well-being (Todres & Galvin, 2010). Our participants had an urge to do something, which gave them a feeling of peacefulness and control, contributing to their well-being.

The Danish philosopher Kierkegaard (1813–1855) argued that we never fully learn to know ourselves because we do not truly understand our essence until the end of our lives (e.g., death, at death) (Kirkegaard, 1994). When confronted with our mortality and struck by reality, we come closer to understanding ourselves by becoming conscious of life. This may explain why our participants came to value and appreciate life to a greater extent. The inner experience and awareness of one’s mortality, suffering, and the struggle to find meaning in life is deeply personal and can make the patient feel a deep sense of isolation. Existential loneliness is common in situations such as being diagnosed with incurable cancer (McKenna-Plumley et al., 2023). Relatives and HCPs may not fully understand the depth of the emotional or spiritual struggles, which can intensify the patients’ sense of being alone with their thoughts and fears. This was reflected in our findings when the participants chose to engage with others in a similar situation, which alleviates the feeling of loneliness. The opportunity to seek the experience of true homecoming, instead of relying on the inauthentic and not sustainable “at-homeness” as human finitude and vulnerability, announce themselves in many ways (Todres & Galvin, 2010). In that sense life and who our participants were became clear to them and thus optimism was emitted.

The transition from being healthy to becoming deadly ill made the participants feel tremendous uncertainty as to bodily sensations, which affected their sense of identity. Common sense was no longer sufficient and they had no idea of what was really happening to them within the possibility of early death. We found that the notion of dying with cancer is closely related to physical appearance and loss of function as shown in previous research (Tollow et al., 2023). Bury elaborate on attention to bodily states and when a perceived understanding of bodily sensations and common-sense and self-perception loses its grip (Bury, 1982). Hence, the participants came to struggle with their existence and acceptance of the diagnosis based on difficulties in linking their unaffected physique and not feeling ill with their illness. This also resonates with Merleau-Ponty’s existential phenomenological perspective that the body is central to personal identity and experience (Carel, 2019). The participants’ struggles with bodily changes and symptoms highlight the connection between their embodied experiences and their self-perception. This junction reflects Merleau-Ponty’s notion of the body as an objective entity as well as a subjective experience. The same applies to Cavel’s perspective on illness as a systematic transformation of the body’s experience, reaction and performing of tasks as a whole. Change in illness is not local or external but global and at the core of the self (Carel, 2011). Accordingly, the well-known strong need to objectify cancer, which was also felt by our participants, can become an endless struggle (Hulse et al., 2024).

4.1. Strengths and limitations

The study was designed and reported in accordance with the COREQ guideline, which promotes transparency and replicability. The processes of theoretical sampling ensured that the findings were grounded in the data, allowing us to look at them from multiple perspectives. This approach led to deeper insight and strengthened the validity of our research findings. Concurrent data collection, analysis and related activities enabled emerging findings to guide the data generation process. The chosen research strategies helped incrementally build and ensure rigour. The findings are strongly supported by previous research and existential theories. Also, all authors were actively involved in the analysis and reporting process.

It can be argued that there is always more than one way of understanding a text, but that does not make all interpretations equally valid. We have tried to remain as open as possible in our interpretations and with continuous reflection, e.g., when linking them to clinical practice. All generated data were used in the analysis process.

Credibility in a qualitative study is connected with the richness of information obtained in each interview. In our study it was encouraged by taking the individual participant’s situation into consideration when planning for an interview and being sensitive, as an interviewer, to reactions during the interview. It made the narrations seem spontaneous, fluent and delivered with commitment. The open-ended questions and exploratory nature of the method also allowed for uncovering of the participants own interpretations of their experiences, which contributed to the richness of the data.

The study also had limitations. The geographic heterogeneity of participants was limited, as all patients were from the Region of Southern Denmark and the same Department of Oncology. The participants all had a high degree of internal and external resources, which may hamper the transferability of the findings to broader populations such as less resourceful patients. Nevertheless, empowering patients to tell their stories was a significant strength of the study. The rich descriptions of the participants’ experiences of their everyday lives illuminated complexities, challenges, and rewards that may resonate as meaningful to others. Since existential issues are common for all humans, it is supposedly a question of resources and time to reach a feeling of reconciliation.

4.2. Clinical impact

The findings from our study emphasize the importance of acknowledging and approaching the personal experience of illness in daily clinical practice. Every dimension of life becomes affected when diagnosed with incurable cancer. It is crucial that the HCPs adequately support the patients in the early stages of their illness trajectories to foster resilience in the process towards reconciliation and generally through the trajectory. Many of our participants did not feel ill, even though they talked about fatigue and impaired physique. This can be confusing for the HCPs, as it does not align with their understanding of the disease. Therefore, it is important for the HCPs to distinguish between clinical aspects of the disease and the patient’s perceptions, goals, and values, rather than imposing their own views on the patients.

Another important aspect is to let the patients know that the HCPs are genuinely interested in every aspect of their illness, which is a prerequisite for patient-centred and holistic care. Navigating the healthcare system and knowing what to expect from it can be difficult, and it is necessary that HCPs at an early stage convey their interest in the patients’ experiences and make it a natural part of the conversation. A challenge lies in approaching private and sensitive topics in a way that explains its purpose without harming the relationship with the patient. Some HCPs, however, seem to be reluctant to engage in such communication and the issue needs to be addressed (Alcalde & Zimmermann, 2022).

Our findings show that contemplating death close to diagnosis is difficult, which makes discussions about end-of-life care challenging and seemingly irrelevant. Choosing the appropriate time for the talk requires sensitivity of the HCP, which can only be obtained through continuous attentiveness to the patient’s experience.

A systematic cultural and normative reorganization of delivering patient-centred care is required to fully succeed. The HCPs need more time with the patients to delve into their existential experiences, which should be done in the same systematic and cooperative manner as other more practical tasks involved. Education in communication about existential experiences and sensitive topics must be prioritized early in healthcare educational programmes in order to make it a natural and equally important part as the medical aspects of a disease. Continuous supervision of the HCPs and self-reflection could be required to develop sensitivity as to when and how to approach the patients and begin the dialogue. This could be done through enhancing the integration of the framework of Excellent Nursing in the daily practice of early PC as it aims to provide person-centred care in which the acknowledgement of patients’ existential challenges is a core value (Stie et al., 2024).

5. Conclusion

Our study provides a detailed exploration of how individuals with incurable cancer navigate their diagnoses to stand still in the storm. It finds the interplay of doing something and re-evaluating oneself and life important. Understanding these aspects can inform clinical practice and enhance strategies for early palliative care to ensure they are compassionate and aligned with the existential needs of the patients. Further research should elucidate how to best support the HCPs in communicating and cooperating with the patients on these issues.

Biographies

Johanna Swenne is an intern in clinical oncology and Ph.D. student at the Department of Oncology at Vejle Hospital*.

Ricko Damberg Nissen holds a M.A. in Anthropology & Religious Studies and a Ph.D. He is a senior researcher at the Department of Public health at University of Southern Denmark (USD).

Torben Frøstrup Hansen is an oncologist. He holds a Dr. Med. degree and serves as a clinical professor at the Department of Public Health research at the USD. He is the head of research at the Research unit of the Department of Oncology at Vejle Hospital*.

Lars Henrik Jensen is the head of department at the Department of Oncology at Vejle Hospital*. He is an oncologist, holds a Ph.D. and is an associate professor at the Department of Public Health research, USD.

Jens Søndergaard is a general practitioner with a specialist degree in clinical pharmacology. He holds a Ph.D. and is professor at the Department of Public Health at the USD, and head of the Research Unit of General Practice.

Mette Stie is a nurse at the Department of Oncology at Vejle Hospital*. She has a master’s degree in clinical nursing and holds a Ph.D.

Appendix 1: Interview guide

Life with incurable illness in the early stage.

Theme	Research question	Interview questions
Introduction	Introduction of the interviewer. Presentation of the purpose and aim of the project. Consent form. Questions?
Context	How is lived life for someone newly diagnosed with an incurable cancer?	Can you tell me about the time when you got the diagnosis? What does it make you feel being diagnosed with incurable cancer? How are you doing today? Do you feel ill? Why or why not? How do you experience receiving treatment? Why is it important to say yes to treatment? How does it affect your daily life? Is being ill with cancer how you imagined it would be? How is your family experiencing the situation? How does that affect you?
Early palliative care	What factors influence the patient’s quality of life in the early palliative phase?	Do you feel that you have received the help you needed in the initial period after your diagnosis? Can you tell me about it? Have you had any thoughts on how you want to live the rest of your life? What are you looking forward to, what are you hoping for? What are you worried about? What do you imagine will happen? What is your understanding of palliative care? What do you imagine palliative care can contribute with? Do you think you have received palliative care in any way? Have you talked about palliative care with anyone?
Early integration of palliative care across sectors and professions	How do patients wish the early phase of palliative care should be?	What are your thoughts on multiple healthcare professionals with different knowledge and roles being involved in your illness trajectory? Of those you have met up until now, who do you feel most comfortable with? Why? Do you want to be involved and have an active role in your illness trajectory, making decisions about your treatment, etc.? How? Who do you feel takes main responsibility for your illness trajectory? Is your general practitioner taking part in your illness trajectory? How would you like to receive information about the options for palliative care and treatment?

Funding Statement

This work was supported by the Cancer Research Foundation.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Authorship contribution statement

Johanna Swenne: Conceptualization, Design, Data curation, Analysis, Validation, Writing, Project Administration. Mette Stie: Conceptualization, Design, Analysis, Validation, Review & Editing, Supervision. Ricko Damberg Nissen: Analysis, Validation, Revision, Supervision. Torben Frøstrup Hansen: Validation, Revision, Supervision. Jens Søndergaard: Validation, Revision, Supervision. Lars Henrik Jensen: Validation, Revision, Supervision

Data availability statement

Data in relation to this manuscript can be made available by the corresponding author upon reasonable request.