Patients’ responses & reflections when receiving news of cancer progression: a qualitative study

Abstract

Background

Limited literature exists characterizing the range of patient reactions during conversations about serious illnesses. This paper explores the variability of patients’ responses when receiving bad news about their cancer progression to offer guidance for clinicians navigating these conversations through a patient-centered approach.

Methods

Eighty-four participants were interviewed and asked to put into their own words why finding out their cancer is growing is difficult news to hear. Responses were transcribed and qualitatively coded by multiple data analyzers using inductive content analysis to categorize responses and develop themes.

Results

We grouped the data into two main themes: (1) a spectrum of negative and positive emotional responses and reflections upon hearing bad news, and (2) considerations about quality of life and the future. Participants expressed a range of strong emotions and reflections on their future, including concerns about life expectancy, quality of life, and available support, as well as positive reflections of acceptance and hope.

Conclusions and implications

This study illustrates the diverse ways patients respond to news of disease progression, emphasizing the need for individualized, empathetic communication strategies to address these responses. The findings provide clinicians with insights to better navigate these conversations through a patient-centered approach.

Background

Receiving news of a cancer diagnosis is a difficult conversation that confronts patients with the need to understand complex medical information, weigh treatment options, and make important decisions about their health, all while dealing with the emotional impact of learning they have a life-threatening illness [1]. While oncologists participate in serious illness conversations regularly, navigating the best way to support each patient’s individual needs remains a communication challenge. Serious illness conversations, particularly those that involve disclosure of prognosis, have significant influence on patient adherence to treatment, emotional adjustment, understanding of their diagnosis, and satisfaction with care [2, 3].

In order to optimize how clinicians can facilitate serious illness conversations, it is important not only to understand patient preferences for receiving bad news, but also the variability of patient responses to receiving bad news. A recent study interviewed 23 oncology patients on their perception of the moment when they were given a diagnosis [4]. Patient reactions to the bad news varied considerably including feelings of shock, fear & helplessness, disbelief & denial, anger and feeling of injustice, emotional distress and even thankfulness. A systematic review of 28 studies examined patient experiences with breaking bad news and clinican-patient communication [5]. The review identified a wide range of patient responses including emotional reactions, information-seeking, and support needs. Complementing these findings, a previous study developed a typology of diagnosis experiences encompassing incongruent, incidental, validating, and life-context categories, demonstrating that a cancer diagnosis is not universally met with shock or despair but is shaped by broader social and life contexts [6]. More recently, a qualitative interview study highlighted the emotional complexity of a cancer diagnosis in young adults and in particular noted persistent fears of recurrent and the avoidance of emotional support [7]. The breadth of responses in this setting prompted a question of whether the variability of patient reactions is also observed during other serious illness conversations, particularly those involving news of disease progression.

It is valuable to explore how patient reactions and responses may be distinct in conversations disclosing cancer progression, given most of the literature has focused on the difficult conversations that occur at the time of cancer diagnosis. At the time of disease progression, many patients have already accepted their diagnosis, and the likelihood that their disease is incurable [8, 9]. These conversations may also be particularly difficult if the outcome is a shift from cancer-directed treatment towards best supportive care alone. Patient responses to both an initial cancer diagnosis and subsequent news of disease progression are likely to evolve over time. Skillfully guiding conversations about cancer progression requires a nuanced understanding of the variability in these responses among patients.

Currently, there is limited literature that guides clinicians regarding patient attitudes and responses in this setting. By learning about patient perspectives in conversations discussing cancer progression, clinicians may be better equipped to provide support and prioritize discussions of patients’ values, wishes, and emotions.

Objective

The objective of this paper is to qualitatively explore participant responses to the news of their cancer progressing and provide guidance to clinicians on how best to facilitate these conversations using a patient-centered approach. As such, this paper represents a secondary analysis of data collected in a primary study. The primary study from which this line of inquiry emerged was designed to explore patient preferences for treatment options that offered progression free survival (PFS) gains with and without any gain in overall survival (OS) compared to treatment with OS gains [10]. Participants were also asked why finding out their cancer is growing or spreading is difficult news to hear. This question was not initially analyzed in the primary study, but the variability and richness of responses prompted this secondary analysis in order to better equip clinicians to facilitate these difficult conversations.

Methods

Study design and ethics

In the primary study, ambulatory clinic patients who had completed at least three months of palliative systemic therapy for advanced solid tumors were recruited from four cancer centers in Canada. Attending oncologists invited eligible patients to participate in the study. Patients were then contacted by a research associate who obtained written consent prior to conducting a structured interview (REB approvals Kingston/Belleville REB # 6027441; Ottawa REB # 20190623-01H; Calgary REB # HREBA.CC-21-0452).

Data collection

Interviews were conducted through Zoom video call or in-person by two members of the research team (JTH, JOD) [10]. In the primary study, participants were led through a trade-off exercise to explore their attitudes toward treatment-related risks vs. gains in PFS in a hypothetical scenario of a newly diagnosed asymptomatic but incurable abdominal tumor. Participants were presented with a choice between standard treatment and an additional treatment that corresponded to higher toxicity but with longer average PFS; overall survival was described as similar for both treatment options. For each treatment trade-off, participants were asked about the factors they considered when making this decision.

In the final stage of the interview, following the trade-off exercise, participants were asked: “We know that finding out your cancer is growing or spreading is difficult news to hear. We’re hoping to put into patient’s words exactly why that is a difficult time.” This question was posed in the context of considering a hypothetical scenario of disease progression, although participants were asked to reflect on their own experience with conversations of disease progression. Phrasing of the interview question was developed through pilot testing and deemed appropriate by patient partner feedback. Patients were asked to consent. Interviews were audio-recorded and transcribed verbatim using Otter.AI transcription software [11] and then verified by a research associate (JTH). Transcripts of each participant’s responses were anonymized and labeled with a unique interview ID number. All possible identifiers were removed from the transcripts prior to the coding process.

Data analysis

For this secondary analysis, the process of inductive content analysis was chosen to analyze the data through an exploratory approach [12, 13]. Inductive content analysis involves systematically coding and categorizing data to identify patterns and themes that naturally emerge, rather than fitting responses into predefined categories. Transcripts were read through in their entirety to become familiarised with the data. Transcripts were then analyzed using inductive content analysis. Two members of the research team (JTH, JOD) collaboratively applied open descriptive coding analysis to the first ten participants. During this process, text from the transcripts were tagged as shortened phrases that preserved the core meaning. Phrases with similar meanings were grouped together as codes that were then labeled to describe that group of participant responses. Any discrepancies in the coding of data were discussed by JOD, JTH, and MB until consensus was reached. Codes were documented in a codebook and used for the remaining coding process that was conducted by JTH, while remaining open to the possibility of new codes throughout subsequent transcript analysis. Thereafter, three members of the research team (MB, JOD, JTH) used the codebook to individually organize codes into categories. Due to the large number of codes generated from the data, codes were first assimilated into smaller groupings (referred to as sub-categories) which reflected codes that were similar in content. Sub-categories were then re-combined into categories according to the context in which they were discussed in the overall interview. Finally, categories were sorted into two themes. An independent peer-review of the data aided in establishing trustworthiness of the analysis. The research team (MB, JG, DK, JOD & JTH) met biweekly to discuss the organization of categories and themes and to mitigate lone researcher bias. The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist guided the evaluation of trustworthiness and ensured transparency and rigor in the analysis [14]. MAXQDA 2018 software was used to facilitate the analysis of data [15].

Findings

Participant characteristics

One hundred participants met the eligibility criteria. Participants were interviewed in-person (n = 39) or virtually through Zoom video-call (n = 61), in light of Covid considerations. A portion of participants in the primary study (n = 14) were unable to answer why finding out their cancer is growing or spreading is difficult news to hear. In most cases this was because participants were already notably emotional and the interview was truncated prior to this question being asked. All other responses were included in this secondary analysis (n = 86).

Table 1 summarizes participants’ characteristics: 56% (n = 48) identified as female, 62% (n = 53) were over 60 years and 77% (n = 66) completed post-secondary education. Primary cancer sites from Kingston, Belleville, Ottawa, and Calgary were represented, and 46% (n = 40) of participants were from Kingston. Eighty participants were currently on palliative systemic treatment, of whom one described the intent of treatment as curative, 45% (n = 38) as intended to prolong life, 5% (n = 4) to improve quality of life, and the remainder as a combination of goals (not including cure).

Table 1.

Demographics of study participants.

Sex	Participants (%)
Male	38 (44)
Female	48 (56)
Other/not specified	0
TOTAL	86 (100)
Age
<40	4 (5)
40–60	29 (34)
>60	53 (62)
TOTAL	86 (100)
Education
less than high school	4 (5)
high school graduate	15 (17)
more than high school	66 (77)
missing	1 (1)
TOTAL	86 (100)
Cancer Site
GI	35 (41)
breast	16 (19)
lung	10 (12)
GU	9 (10)
brain	10 (12)
ovarian	3 (3)
unknown primary	2 (2)
missing	1 (1)
TOTAL	86 (100)
Referring Center
Kingston	40 (46)
Ottawa	31 (36)
Belleville	9 (10)
Calgary	6 (7)
TOTAL	86 (100)
Treatment Type
Cytotoxic chemotherapy	65 (76)
Immunotherapy	9 (10)
Targeted or Hormonal	10 (12)
Missing	2 (2)
TOTAL	86 (100)

Through inductive content analysis, participant responses were organized into two major themes. The themes reflect the underlying meaning within the categories and provide an interpretation of the data. Figure 1 shows the themes and categories that were developed from participant responses.

Fig. 1.

Developed categories and themes when receiving news of cancer progression.

Theme 1: a spectrum of negative & positive emotional responses & reflections upon hearing bad news

The first theme describes the range of participants’ emotional responses and reflections when hearing that their cancer has progressed. This theme encompasses a spectrum of participant responses and highlights the dichotomy of emotional reactions to news of cancer progression. Despite the potentially leading wording of the question, participants endorsed both positive and negative responses.

Category 1.1: negative emotional responses

When receiving news of their cancer progressing, 46% of participants (n = 40) recalled a variety of emotional reactions and reflections. Nine percent of participants (n = 8) described feelings of shock. One participant put it simply: “When you receive that information, you just get so emotional that you kind of shut down what the doctors are saying” (p100) and others drew on the protective feature of denial, saying, “It’s easier to be in denial, that’s the best thing to do and just deny it’s happening and go about your daily routines” (p058).

Still 16% of participants (n = 14) recalled feelings of fear when hearing news of their cancer progression. One participant described it as: “We’re all fighting for some of our life and it’s a very scary time” (p041) while another described their fear associated with a lack of control, stating: “It’s this disease over which we have no control. I think it makes it that much more difficult” (p095).

Feelings of emotional distress and devastation were also commonly expressed as initial responses to the difficult news of cancer progression: “Well, it’s devastating. What are you going to say it is a terrible thing to find that out” (p014) or “When you get that news it’s earth shattering. It’s demoralizing and crippling” (p042).

In addition to feelings of emotional distress or devastation, participants described reactions of disappointment, feeling discouraged, or having their hopes diminished. One participant stated, “It’s quite disheartening because of what you’ve gone through so far hasn’t worked” (p082) while another acknowledged “Of course it’s sad news because you’re hoping for the treatment to keep working and things to improve” (p077). These feelings of disappointment were also associated with feeling disappointed in oneself or experiencing feelings of self-blame in 8% of participants (n = 7). One participant said, “You feel blamed, you know, that you didn’t fight hard enough… that you’re not winning the war, the battle…Embarrassed doesn’t even come close to how you feel. You feel like you failed somehow” (p098). Negative responses of emotional distress, devastation, fear, or disappointment may be anticipated reactions in a conversation about disease progression, however, these powerful patient reflections provide important insight about the range of thoughts that accompany these emotional responses.

Category 1.2: positive emotional responses

In contrast to patients recounting feelings of negative emotion, 29% of participants (n = 25) reflected on responding to news of disease progression with a positive emotional outlook, expressing feelings of acceptance, optimism, gratitude, and hope. These participants talked about accepting their diagnosis: “I just kind of decided to try and look at the glass half full” (p006). One participant described their strategy “[to] surround yourself with as many positive people as you can and enjoy life and hopefully things might change” (p081). Similarly, 12% of participants (n = 10) talked about a sense of hope and gratitude. One participant said “I am grateful. It sounds crazy, my friends think I’m nuts, but you know, for a bad situation, it’s not so bad. The best thing you can do is just say, this is what’s on my plate and these are the cards you’ve dealt. So now how do you play them?” (p092). The large spectrum of emotional responses to the same news of cancer progression highlights the individual nature in which patients respond to bad news and the type of support they require.

Theme 2: quality of life & considerations for the future

The second theme summarizes the variation in participant responses after their initial reaction subsides and includes thoughts of a shortening timeline, treatment implications, emotional and informational support, expecting bad news, and planning for the future.

While many participants reflected on their emotional responses to receiving difficult news, other participants reflected on their thoughts or concerns that typically led patients to ask the question, ‘what’s next?’ This question led to the formation of the second theme, which includes thinking about what sort of treatment might be introduced, how their quality of life is going to change, what sort of support they have or will need moving forward, what their priorities are for the future and how all of this will impact their overall prognosis. These questions and considerations are described in the following sections as categories.

Category 2.1: timeline is shorter

The strong emotions highlighted in the first theme of participants’ emotional responses and reflections were often tied to comments about realizing a shortened lifespan, and reflections on death or dying. Thirty-six percent of participants (n = 31) talked about their lifespan becoming shorter or commented on their own mortality, making it the most frequently mentioned category throughout all interviews. One participant shared that “It’s a difficult time to realize that life can be very short” (p043), while another stated “I have to face the fact that I was dying sooner than I had hoped” (p063). Though conversations around prognosis often included discussions of functional changes and uncertainty of the trajectory of illness, conceptualizing prognosis from a timeline perspective emerged as an important category for the participants we interviewed. This led participants to think about how they may maximize their quality and/or quantity of life left through different treatment options, including best supportive care alone.

Category 2.2: treatment implications & quality of life

Upon hearing their cancer is growing or spreading, 8% of participants (n = 7) responded with thoughts about what this means for their treatment. Some participants addressed the possibility of new treatment as a beacon of hope. One participant stated: “For me, when that occurs it means that we have to re-engage with the medical team and talk about exciting new treatments that I am eligible for that may prolong life” (p028), while another participant worried about side effects or changing quality of life that may come with new treatment. They said: “It just means that you know, you’ve got to get a little more aggressive, maybe with your treatments and then you’re going to be experiencing nasty side effects” (p016).

In many of these discussions, participants expressed that the quality of their life that is left is just as important as the amount of time left: “Really look at the quality of life, how it affects you because you know, what life we do have left – what do you want to make it to be?” (p021). Side effects from introducing more aggressive treatments and the sources of support available to the participant were major factors in imagining what their quality of life might look like.

Category 2.3: emotional & informational support

Drawing from different sources of support was important to all participants and this can take many forms. Participants described emotional support derived from family, friends, faith, and spirituality as something to lean on during harder times of their cancer journey: “My friends and family have just been there. They’re my walls” (p092) and “The one thing that gets me through is my faith. I look at my faith and beliefs and that’s what is getting me through this” (p001). While these comments reflect the positive impacts of emotional support, informational support (providing knowledge or advice) was referenced through a more negative lens that highlighted a participant’s experience with lack of, or need for, increased communication with healthcare providers throughout their cancer journey. One participant said, “It’s a time of a lot of questioning and you just sort of go to the worst and I find that’s the time when I need support and need a little bit more time from health care providers” (p100) while another echoed similar feeling, saying “It’s like [health care providers] are speaking another language” (p097).

Category 2.4: expecting bad news & planning for the future

Interestingly, 7% of participants (n = 6) explained that by anticipating or expecting their cancer to grow and spread, they were better able to cope with the bad news of cancer progression (when it did happen) and manage their expectations accordingly. One participant said: “I’m just assuming it’s going to grow and spread…I expect things to go downhill so when they start to get bad, I’m just waiting for that” (p078) and another commented: “When you’ve lived long enough in your own skin, when something isn’t working in your body you know it” (p091). Other participants talked about taking the opportunity to adjust their expectations about what lies ahead with their illness upon hearing bad news.

Twenty-one percent of participants (n = 18) connected conversations of cancer progression with the concept of ‘facing reality’. A couple of participants shared the opinion that knowing their reality is easier than coping with uncertainty. One participant said: “At least you know where you stand now and then you can start to formulate how you’re going to go forward” (p091). For some, being confronted with the reality of cancer growing or spreading raises questions like “How do I fit everything that I want to do in before the cancer takes over?” (p088) and the worry that time is running out. These responses illustrate the connection between discussions of cancer progression and thinking about the future.

Discussion

Findings from this secondary analysis describes participant reflections on why news of cancer progression is difficult to hear, aiming to better characterize the variation in patient responses during serious illness conversations. Participants recalled a variety of strong emotions that prompted a wide range of reflections about what the future will look like including questions such as: how much time do I have left? What does this time look like in terms of quality of life, and what type of support do I have to help me? The findings offer valuable insights into the wide range of patient responses during serious illness conversations.

In response to news of disease progression, clinicians may often assume that patients will be devastated, reflecting emotions of fear, shock, emotional distress, or denial. Many participants had responses that aligned with this assumption, underscoring the significant emotional toll of learning that one’s cancer is advancing or spreading. These responses further emphasize the necessity of providing patients with enhanced support during such discussions.

Interestingly, however, a surprising number of participants expressed thoughts about hope for the future, talked about sources of support, or shared perspectives of acceptance, gratitude, and optimism. These reflections stemmed from experiences with family and friends, discussions about support systems, aspirations for the future, and reflecting on the elements contributing to a patient’s quality of life. These factors are unique and deeply personal to each individual. The counter-intuitive aspects of one quarter of participant responses highlight the individuality of the patient perspective, the amount and type of support they require, and the kind of conversations they may wish to engage in at that time. Finally, many participants also described various questions that emerged during discussions of disease progression including considerations regarding timeline, quality of life, available support systems, or strategies for future planning moving forward.

These findings demonstrate the unpredictable nature of patient preferences and thoughts on disease progression, highlighting the challenge for clinicians to accurately anticipate which topics are most important for each patient. Navigating sensitive conversations around disease progression is important for sharing prognostic information, understanding patient’s fears and goals, and exploring their decision-making preferences and views on trade-offs [16]. Clinicians leading serious illness conversations should be aware of the range of thoughts and emotions a patient may be experiencing to guide the discussion effectively.

The Psycho-Existential Symptoms Assessment Scale (PeSAS) is a validated tool designed to identify and characterize psycho-existential distress in palliative care patients [17]. A recent longitudinal study using PeSAS explored symptoms including anxiety, meaninglessness, and fear of death, finding that most patients experienced symptom improvement over time [18]. Notably, individuals with higher baseline distress demonstrated greater improvements compared to those with moderate baseline scores. These findings suggest that patients’ cognitive and emotional responses to a palliative diagnosis evolve over time.

For example, early-stage cancer patients may tend to focus on coping with uncertainties about their future given their risk of metastases or recurrence [19]. In contrast, advanced-stage cancer patients may be more likely to focus on the reality of a limited life expectancy, end-of-life planning and complex medical decision-making [9]. Direct comparison of the emotional responses to a new cancer diagnosis and to news of disease progression is challenging. In both settings, the wide range of reactions highlight the critical importance of patient-centered communication during these discussions.

Our findings offer comprehensive insights in the diversity of thoughts, feelings, and questions patients may have in the setting of serious illness conversations about disease progression. The diverse spectrum of patient responses from shock, fear, denial, and emotional distress to acceptance, optimisim, and hope, may reflect the evolving emotional trajectory associated with disease progression as well as a patient’s broader life context. Although many validated frameworks exist to structure these discussions, understanding the variability in patient responses can provide practical guidance on how best to apply these frameworks and address the array of emotions, thoughts and reflections that patients are expressing. While frameworks may outline higher level topics to consider during these discussions, our data supplements these frameworks by providing concrete examples of what patients are thinking.

Prior work from a healthcare provider perspective highlights clinicians’ awareness of the wide variability in patient and caregiver emotional responses to discussions of cancer progression [20], as well as the challenges of breaking bad news and the importance of adapting communication to patients’ context, family involvement, and preferences. The present study centers patients’ lived experiences in these conversations and demonstrates alignment between clinician awareness and patient-reported emotional diversity. Integrating both perspectives provides valuable insight to inform effective and sensitive communication.

Our findings should also be interpreted in the context of the study limitations. This study was a secondary analysis of data not originally collected to address the present research question, underscoring the need for more targeted and in-depth investigations of patient responses to discussions of cancer progression, to further explore its many dimensions. The extent of physician-related selection bias is unknown, and the study sample was predominantly composed of individuals with higher levels of education, limiting the generalizability of our findings to populations with lower socioeconomic status, limited health literacy, or greater structural vulnerability. In addition, the preamble and framing of the main interview question may have unintentionally suggested that disease progression is inherently distressing, which may have primed participants to focus on negative emotions in their responses. However, despite this preamble, participants expressed a wide range of responses reflecting diverse emotions. The strengths of our study include large sample size with participants from multiple Canadian Centers, and the involvement of multiple data analyzers following a robust analytical protocol and mitigating against lone researcher bias.

Conclusions & future directions

The results of this study demonstrate the diverse range of responses to news of cancer growing or spreading, providing valuable insights for clinicians to guide supportive conversations that cater to each patient’s individual emotions, questions, and goals. Consideration of these findings when utilizing established frameworks for having serious illness conversations may help to improve the effectiveness of these discussions by enabling a more personalized and empathetic approach, that addresses both the emotional and practical concerns of patients when they are presented with news of disease progression.

To aid clinicians in having serious illness conversations that include discussing prognosis, a number of patient-centered, structured frameworks provide guidance on how to navigate these interactions. The SPIKES protocol [21], BREAKS protocol [22], ABCDE model [23], and the Serious Illness Conversation Guide (SICG) [24] are examples of well-established and validated frameworks for guiding serious illness conversations that often involve breaking bad news. These frameworks were developed primarily for use in the cancer population but have since been adapted for other populations with non-malignant serious illness [16, 25–27]. Approaching difficult conversations thoughtfully through a framework can have significant impacts on a patient’s well-being, including improved patient-clinician rapport and trust, increased patient-led advance care planning, and openness to receiving psychosocial support [3, 28]. One of the components shared by these frameworks is that they acknowledge the potential variability of patient reactions and use language that allows the clinician to explore the patient’s values, wishes, and emotional responses in the face of receiving bad news, in order to provide adequate support.

The SICG is designed for use in a variety of settings among diverse populations [24]. It serves as a useful guide to put our findings into the context of clinical practice. Its components prompt discussion of what matters most to the patient, and what their wishes are moving forward for their life and care plan in the context of their serious illness. Elements of the guide are meant to be adapted depending on the purpose of the conversation, and the responses of the patient during the conversation [16]. Patients’ unique illness understandings, preferences for care, and values vary considerably during serious illness conversations that take place in the oncology context. Considering the spectrum of patient reactions to news of cancer progression may allow clinicians to customize this structured framework and prioritize discussions that align closely with patients’ individual values and preferences, to provide optimal support during clinic appointments, and improve quality of care.

Author contributions

JTH participated in conceptualization and project design, completed data acquisition, analysis & interpretation as well as drafting of manuscript and critical revision with final approval before publication. MB participated in conceptualization and project design, completed data analysis & interpretation as well as drafting of manuscript and critical revision with final approval before publication. JOD participated in conceptualization and project design, completed data acquisition, analysis & interpretation as well as critical revision of the manuscript with final approval before publication.J G participated in conceptualization and project design as well as data interpretation and critical revision of the manuscript with final approval before publication. DK participated in conceptualization and project design, as well as data interpretation and critical revision of the manuscript with final approval before publication.

Funding

This work was supported by the Canadian Institutes of Health Research (CIHR) (grant reference number 165888). The funder had no role in the design or conduct of the study.

Data availability

The data underlying this article are available in the article. A list of all available participant comments is available on request from the corresponding author.

Competing interests

The authors declare no competing interests.

Ethics approval and consent to participate

Ethics approval was obtained for all participating centers including Kingston/Belleville (REB # 6027441), Ottawa (REB # 20190623-01H), and Calgary (REB # HREBA.CC-21-0452). Participants signed written informed consent prior to engaging in any study procedures. The study was performed in accordance with the Declaration of Helsinki.