A Meaning-Making Conversation: A Formative Mixed Method Pilot Study of a Brief Intervention for Patients Living Long-Term With Incurable Cancer

Abstract

Background

Many patients with incurable cancer are expected to live for a considerable period of time, yet with the knowledge of their disease’s inevitable end-of-life outcome. This duality can lead to existential concerns. A single one-hour meaning-making conversation was developed in which a patient explores their sources of meaning together with a spiritual counselor.

Aim

To explore how patients experience and benefit from a conversation aimed at supporting meaning-making, in order to inform further refinement of this intervention.

Design

We conducted a formative mixed method pilot study. Evaluation interviews assessed patients’ experience and reported benefits. A reflexive thematic analysis was conducted. Key themes were compared and contrasted by intervention timing and patients’ experience of existential concerns. Validated questionnaires were administered to assess patients’ existential wellbeing, problems, and needs pre- and post-intervention.

Setting/Participants

Twenty-one patients with advanced solid malignancies and a prognosis >1 year participated at two different hospitals.

Results

All patients experiencing existential concerns appreciated the meaning-making conversation and reported benefits, such as reflection, validation, insight and actions related to sources of meaning. Half of the those not experiencing existential concerns reported no benefits, and some reported a negative experience. Quantitative data suggest a decrease in most existential problems and needs post-intervention. Existential wellbeing increased post-intervention.

Conclusions

A meaning-making conversation can support the process of meaning-making for patients living long-term with incurable cancer. Refinement of the intervention should focus on targeting patients experiencing existential concerns.

Keywords

meaning-making psychosocial intervention palliative care existential concerns patient living long-term with incurable cancer existential wellbeing

Introduction

During the last decades, the number of patients living long-term with incurable cancer has increased.¹ This is the result of a rising cancer incidence and the continued improvement in treatment options, such as targeted therapies and immunotherapy.^2-4 These patients are situated between survivorship and palliative care. They may expect to live for a substantial period of time with a disease that cannot be cured but does not pose an immediate threat to life. This patient group is often overlooked in research and clinical practise. Care should be optimized to support this growing patient group.⁴

A notable challenge for these patients is the presence of existential concerns. Despite living long-term with incurable cancer, patients experience the desire to continue their ‘normal’ life.^5-7 However, one of the most difficult aspects of living long-term with incurable cancer is dealing with uncertainty.^5,8-12 This encompasses questions about prognosis, the availability of treatment options, and whether subsequent treatments will be effective or cause severe side effects.¹⁰ Additional existential concerns include fear about the future of their families, anxiety about dying, feelings of isolation, losing control, changes in self-image and feelings of despair and worthlessness.^6,10,13 These concerns can have a negative impact on overall quality of life and existential wellbeing.¹⁴ Narratives from patients living long-term with incurable cancer highlight how patients’ meaning-making process is characterized by the tension between life and death, hope and despair, and of what has been lost versus what remains.⁷ Meaning-making involves patients striving to restore their sense of meaning and purpose in life, which is suggested to give motivation to deal with the changes imposed by the cancer.^15-18

Various meaning-making interventions have shown to effectively increase existential wellbeing. However, these are either developed for patients who are terminally ill or involve multiple sessions.^19-21 The latter places not only a significant strain on patients, but also on hospital resources, particularly in times of limited availability. To address this gap, we have adapted a brief, single one-hour meaning-making conversation specifically for patients living long-term with incurable cancer. During this conversation, patients explore their sources of meaning, existential needs and priorities together with a spiritual counselor. The counselor synthesizes these insights into a meaning-making synopsis, which is consequently shared with the patient and their health care provider. Our approach is based on a global meaning session (exploring one’s identity, relationships, values, inner posture, and worldview) with a spiritual counselor to set meaningful goals for rehabilitation.²² This format draws on the meaning-making model of Park¹⁵ and showed to increase patients’ motivation. It has previously been successfully adapted for patients after systemic curative treatment for breast cancer or melanoma. The findings suggest that enhancing patients’ awareness of their sources of meaning strengthened the process of meaning-making in order to address existential concerns.²³

The aim of this current formative pilot study was to explore how patients experience and benefit from a meaning-making conversation, an intervention aimed at supporting meaning-making. The findings will inform further refinement of the intervention to enhance reported benefits²⁴ and support the translation into meaningful and implementable clinical practice.²⁵

Methods

Study Design & Setting

This mixed-methods formative pilot study used concurrent quantitative and qualitative approaches to enhance our understanding of the benefits of a single one-hour meaning-making conversation. The formative research approach was chosen to enable iterative refinement of the intervention.^24,25 Prior to this study, as part of this iterative process, focus groups with patients living long-term with incurable cancer, their relatives, and health care providers were conducted to assess meaning-making needs. The findings informed the adaptation²⁴ of the existing intervention for patients living long-term with incurable cancer.²³

The study was reported according to the guidelines for Good Reporting of A Mixed Methods Study.²⁶ The study was conducted between July 2023 and May 2024.

Patient Selection

Patients were recruited from the Medical Oncology outpatient clinic of Amsterdam University Medical Center in Amsterdam, and general teaching Flevo Hospital in Almere. Purposive sampling was used to select a heterogenous group regarding sex, age and ethnicity. A physician-researcher screened outpatient clinic patient lists to assess preliminary eligibility. The treating health care provider had to confirm eligibility and was responsible for recruitment. Inclusion criteria are shown in Table 1. Patients could be invited to participate in the study at three moments during the disease trajectory when existential concerns were anticipated. These moments were previously identified on the basis of the focus groups.

Table 1.

Inclusion Criteria

General inclusion criteria
- >18 years- Diagnosed with advanced solid malignancy- Prognosis of over one year as estimated by the treating healthcare provider based on clinical judgment- Able to communicate in Dutch
Inclusion criteria per time point of offering the intervention
1) Recently after diagnosis	2) Necessary treatment change due to illness progression or therapy intolerance	3) Suspicion of existential concerns by health care provider
Patients who were recently diagnosed with advanced cancer, receiving first-line therapy, whose initial therapy evaluation (mostly after 3 months of treatment) showed stable disease or partial response as measured by tumor markers and/or imaging, suggesting long-term response	Patients who were within 0-3 months after the decision to initiate second- or later line systemic therapy because of progression of disease, or side effects of earlier line therapy	Patients who raised existential concerns during clinical consultations or of whom the health care provider suspected that they had existential concernsNB Patients who were 0-3 months after diagnosis or therapy switch were included in either group 1 or 2

Intervention

The intervention took place in person with a trained spiritual counselor at the treatment hospital. During the intervention they guidedpatients through three components: (1) reflection on future perspectives, (2) exploration of sources of meaning including relationships, inner posture, world view, identity, meaningful activities and values in life^22,27 and (3) the prioritization of these sources and their application to identified (future) challenges.The structure of the intervention is shown in Appendix 1.

Ethics

This study was performed in line with the principles of the Declaration of Helsinki. On the 9^th of March 2022 the study protocol was approved by the Medical Ethics Committee of Amsterdam UMC. All patients provided informed consent.

Data Collection

Data collection involved semi-structured interviews conducted via Zoom and validated questionnaires administered online. This mixed-method process is shown in Figure 1. The topic list of the interview is included in Appendix 2. Questionnaires were collected before the intervention (T0), one week after (T1) and three months after the intervention (T2). At T0 patients were also asked to provide information regarding their personal and medical histories. Existential wellbeing was assessed using the Northwestern Ego Integrity Scale (9 items), which measures ego-integrity and despair. These are established outcomes associated with the meaning-making process.²⁸ Ego-integrity refers to the experience of wholeness and meaning in life, even in spite of negative experiences. Despair is the experience of regret about the life one has led, and feelings of sadness, failure and hopelessness. Existential needs were assessed using the spiritual needs subscale of the Problems and Needs in Palliative Care (4 items). This assesses difficulties to be engaged usefully, acceptance of the disease, struggle concerning the meaning of death and uncertainty regarding significance to others.²⁹

Figure 1.

Flow chart of the data collection process

Data Analysis

Qualitative Analysis

Qualitative interview data were audio-recorded, transcribed verbatim, and analyzed using reflexive thematic content analysis.^30,31 One researcher (AV) coded the transcripts, witha second (LP) spot-checking for reliability. The analysis was guided both by predetermined evaluation criteria (see appendix 2 for the interview topic guide) and researchers’ openness to emerging concepts. Subsequently, new codes were inductively developed, and codes were refined as data analysis progressed. Thematic analysis was conducted collaboratively until consensus of identification of key themes was reached.

Key themes were first compared across the three different moments of intervention delivery. After that key themes were compared between patients who did or did not report existential concerns at the time of the conversation, as determined from transcript data. Theme frequency was quantified as: “a single patient” (one), “a few” (≤25%), “some” (≤50%), “many” (≤75%), and “most” (>75%).^32,33

Quantitative Analysis

SPSS was used to summarize patient characteristics via descriptive statistics (frequencies and percentages) from baseline questionnaire data. Ego-integrity and despair were calculated as described in Kleijn. Linear mixed models were used, incorporating a fixed effect for measurement time and a random effect for subjects. A P-value of <0.05 was considered statistically significant. Effect sizes were determined by dividing the change from baseline by the pooled standard deviation at each time point (T0, T1, T2). Effect sizes were classified as small (0.2), moderate (0.5), or large (0.8), according to Cohen.³⁴ Presence of existential needs and problems were reported with descriptive statistics (percentages) on the three different time points.

Results

Patients

Thirty-six eligible patients were invited to participate in the study. Of these, fifteen declined, resulting in a final sample of twenty-one participants. One patient unexpectedly died shortly after the intervention, consequently 20 evaluation interviews were conducted. Demographic characteristics are presented in Table 2. A flowchart outlining the inclusion and follow-up process is provided in Appendix 3.

Table 2.

Socio-Demographic and Clinical Characteristics of the Study Population

Socio-demographic and clinical characteristics of the study population (n = 21)	N (%)
Patients
Gender
Female	17 (81)
Male	4 (19)
Age, mean (standard deviation)	64.5 (9.8)
Tumor type
Upper gastro-intestinal	2 (10)
Colon rectal	6 (28)
Gynecological	1 (5)
Renal cel	1 (5)
Breast	11 (52)
Location of intervention
Amsterdam UMC, location VUmc	15 (71)
Flevo hospital	6 (29)
Timing
1) Recently diagnosed	5 (24)
2) Necessary treatment change due to illness progression or therapy intolerance	6 (29)
3) Suspicion of existential concerns by health care provider	10 (47)
Experience of existential concerns based on transcripts(n = 20)
Patients experiencing existential concerns	12 (60)
Patients not experiencing existential concerns	8 (40)
Months after diagnosis of metastatic disease median (interquartile range)	22.5 (5-44.8)
Number of patients having a partner	10 (48)
Number of patients having children	18 (86)
Education
Lower school	2 (10)
Lower vocational	1 (5)
High school	5 (24)
Secondary vocational	3 (14)
Higher vocational	5 (24)
University	5 (24)
Religion
Christian	9 (43)
Hindu	1 (5)
Humanistic	1 (5)
Islamic	0 (0)
None	9 (43)
Other	1 (5)

Qualitative Results

The following themes resulted from the analysis of the transcripts of the patients.

Experience and Appreciation of the Meaning-Making Conversation

Most patients had a positive experience. They described the meaning-making conversation as “good”, “pleasant”, and “warm”, with one participant noting that “it just felt very familiar and safe” (69-year-old woman with breast cancer). Patients valued the opportunity to speak with someone outside their usual social circle. Furthermore, most patients appreciated the synopsis they received afterwards as it offered recognition, clarity, insight or served as a memory aid. A few patients felt that it was unnecessary to receive.

Many participants reported feeling comfortable with, or even valuing, the themes discussed. As one stated, “how nice it is you can talk to someone about giving meaning” (74-year-old woman with breast cancer). One patient found questions about sources of meaning “confronting,” yet still important to discuss.

A few patients evaluated the intervention negatively. One did not find it useful, another preferred not to discuss existential topics with a stranger, and a third said she did not to get a positive vibe from the questions and the surroundings of the conversation: There’s a poster with candles that I remember well, and when you see that during a conversation like that, you associate it with the candles that will be next to my picture on my child’s bedside table when I’m no longer here’’ (61-year-old woman with breast cancer).

All patients with negative evaluations were among those who did not experience existential concerns. One of them had been recently diagnosed, and two had recently undergone a therapy change.

Patient-Identified Benefits

Most patients reported benefiting from the intervention. All patients experiencing existential concerns experienced benefits, whereas many who did not experience concerns reported no benefits. Among those who reported no benefits, two had been recently diagnosed, one had just undergone a therapy change, and another had been referred due to suspected concerns by their oncologist but no longer experienced these at the time of the intervention.

Patients benefitting from the intervention mentioned the following benefits:

Reflection on Existential Concerns and Sources of Meaning

All patients reported that the intervention prompted reflection on their sources of meaning and existential concerns. It encouraged them to consider the challenges of living long-term with incurable cancer and to reflect on what supported them in dealing with these challenges.

You do start thinking about things. How it is for myself and for other people? How am I in life? Those are things that go through your mind afterwards. And what I took away from it [the conversation] is that I thought, well, I’m really hooked on life. However, when my time comes then I won't feel like I left anything unfinished (65-year old woman with breast cancer)

Validation of Existing Sources of Meaning

Many patients indicated that during the conversation their existing sources of meaning got validated. It gave affirmation of themselves, their own lives and their capabilities.

You are forced to face certain facts that you have actually known for a long time. But those facts indicated even more: my family is very important to me. That is the meaning of my life. I do that well. (61-year old with breast cancer cancer)

Insights Regarding Use of Sources of Meaning

Many patients gained insights during or after the conversation about how they engage with sources of meaning. These included recognizing adapted, strengthened, or new sources of meaning. Furthermore, it raised awareness of how such sources could address specific existential concerns and clarified patients’ priorities in life or intentions for prioritizing sources of meaning.

It was great to be able to talk through my concerns. About myself, and about things, and about how I want it when the end is there, but what it actually is, is that I just have the optimism in me and that I want to keep that as long as possible. (65-year old female with bowel cancer)

Undertaking Specific Action Post-intervention

Many patients reported they undertook action following the intervention, with some describing undertaking steps related to addressing their existential concerns.

That was really an eye-opener after this conversation, so to speak. I thought: why do I still have this resentment towards my work? I just want to get on and I also just need to do things that I like. So why not put myself over that threshold again? So I did. (55-year old woman with bowel cancer)

Others patients reported drawing on strengthened, adapted or new sources of meaning after the intervention.

Interviewer: Did the conversation contribute to you apologizing or becoming milder?

Patient: Yes, because the conversation is part of my change. It's not just the conversation. But allowing and having done the conversation and benefiting from the conversation is part of my change (66-year old woman with breast cancer)

Sharing Experiences and Expressing Feelings

Many patients said the opportunity to share experiences and experience feelings had helped to deal with feelings of hopelessness, loneliness, and/or gave relief.

You’re carrying a heavy load, and suddenly that’s gone (61-year old man with gastric cancer)

Improving the Benefits of the Intervention

A few patients wished for more advice or guidance during the conversation. “I missed the tools [to deal with uncertainty]. (…) It was about: What did I feel like and how did I deal with it? But it didn’t offer any advice” (79-year old woman with breast cancer). Some recommended to discuss at the end of the conversation whether they needed more support or help in any kind.

Most patients reported that one conversation was sufficient and helpful enough. A few patients recommended offering the possibility to have another session when things changed in their life or in the course of their disease. A few patients expressed the need for additional support and were advised how to arrange more support from spiritual counselor in their region.

Quantitative Results

Existential Wellbeing

Patients reported more ego-integrity one week and three months after the intervention with a small to moderate effect size. The difference between baseline and one week after the intervention was statistically significant. Despair increased non-significantly after three months with a small effect size. See Table 3 and Figure 2.

Table 3.

Northwestern Ego Integrity Scale

Dependent variable	Timepoint	Estimate		P-value	Effect size
	Baseline (T0)	50.1
Ego-integrity	+1 week after intervention (T1)	57.6	T0-T1	0.025	0.42
	+3 months after intervention (T2)	55.0	T0-T2	0.146	0.27
	Baseline (T0)	41.1
Despair	+1 week after intervention (T1)	41.9	T0-T1	0.828	0.04
Despair	+3 months after intervention (T2)	46.0	T0-T2	0.200	0.28

Figure 2.

Existential wellbeing. *Significant difference between T0-T1 with P-value of P = 0.025

Existential Problems and Needs

Post-intervention the percentage of patients experiencing one or more existential problems or needs had reduced. One week post-intervention, the most pronounced decrease in perceived problems occurred particularly regarding difficulties in engaging usefully and the struggle concerning the meaning of death. The need for attention decreased after the intervention regarding the struggle concerning the meaning of death and difficulties accepting the disease, see Figure 3.

Figure 3.

PNPCsv

Discussion

This formative pilot study enhanced understanding of the benefits of a single one-hour meaning-making conversation. The findings can be used to inform further refinement of the intervention. A key direction for refinement is the targeted inclusion of patients experiencing existential concerns. Many of the patients not experiencing existential concerns did not report benefits from the intervention; a few even described it as a negative experience. This may reflect a tendency among these patients to normally avoid discussing existential issues in order to provide short-term relief from distress. This may later increase the intensity and frequency of avoided thoughts³⁵ and is associated with higher distress and worse quality of life.^36,37 However, coping strategies evolve over the disease trajectory and are often influenced by context,³⁸ which emphasizes that this intervention should be offered at an individualized moment during the disease trajectory. Offering the intervention when patients experience existential concerns may prevent negative experiences and increase the likelihood of benefits such as goal adjustment, acceptance, and taking action, which are associated with reduced anxiety and depression and improved quality of life.^39,40

A notable strength of this intervention is that a single one-hour intervention can support patients‘ meaning-making process without imposing too much demand on spiritual care or psychological services. The reported benefits of our meaning-making conversation align to earlier found working mechanisms of an existential intervention called ‘’In dialogue with your life story” carried out by a spiritual counsellor.⁴¹ Moreover, after a few months, both interventions show a sustained increase in ego-integrity, and an increase in despair, which is likely reflecting the nature of the palliative phase itself.⁴² However, “In dialogue with your life story” needed multiple sessions to achieve these effects, unlike our single session. Similarly, other effective interventions that improve existential wellbeing, for example existential psychotherapy,^43-45 also generally involve six to eight sessions. Furthermore, patients’ reports of taking active steps related to their sources of meaning, along with most indicating that a single conversation was sufficient, suggest the intervention’s potential to enhance self-management and empowerment.⁴⁶ Further research should examine this relationship. Gaining a better understanding of how this intervention strengthens self-management and empowerment would reinforce the rationale for choosing a one-time intervention, especially from the perspective of feasibility and limited resources.

Implications

A meaning-making conversation is a brief, accessible, single-session intervention that supports patients experiencing existential concerns. A future multicenter study is needed that targets a larger population of patients experiencing existential concerns. Comprehensive quantitative testing is recommended to evaluate the efficacy and mechanisms of this intervention.

Limitations of the Study

The questionnaires used may have influenced patients’ experiences. Some patients found certain questionnaire items confronting, coloring their expectations of the conversation, though they ultimately viewed the intervention positively. Another patient felt she might have been more positive about the intervention without filling in the questionnaire beforehand. Future research should take this limitation of these questionnaires into consideration.

The outcomes of this study should be considered in the context of it being a formative pilot study. It was not intended to provide empirical evidence for effectiveness, but rather to use the findings to inform further research and enhance its outcomes.²⁵

Conclusion

This formative pilot study suggests that a single one-hour meaning-making conversation can support the process of meaning-making in patients living long-term with incurable cancer and contributes to improved existential wellbeing. The intervention should be refined to focus on patients experiencing existential concerns. A larger, multicenter study is recommended to further evaluate its impact in this target population and study the relationship with self-management and empowerment.

Supplemental Material

Supplemental Material - A Meaning-Making Conversation: A Formative Mixed Method Pilot Study of a Brief Intervention for Patients Living Long-Term With Incurable Cancer

Supplemental Material for A Meaning-Making Conversation: A Formative Mixed Method Pilot Study of a Brief Intervention for Patients Living Long-Term With Incurable Cancer by Anna Visser, Lenneke Post, Joost Dekker, Lia van Zuylen, Inge R. Konings in American Journal of Hospice and Palliative Medicine®.

Footnotes

Anna Visser

Lenneke Post

Joost Dekker

Inge R. Konings

Ethical Considerations

This study was performed in line with the principles of the Declaration of Helsinki and approved by the Medical Ethics Committee of Amsterdam University Medical Center.

Consent to Participate

Informed consent was obtained from all individual participants included in the study.

Author contribution

All authors contributed to the study conception and design. Material preparation and data collection was performed by Anna Visser. Data analysis was performed by Anna Visser and Lenneke Post. The first draft of the manuscript was written by Anna Visser and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Funding

The authors disclosed receipt of the following financial support for the research and authorship of this article: This work was supported by an unrestricted grant from Gilead Sciences (Grant number: 18861).

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

The datasets generated during and/or analyzed during the current study are available from the corresponding author on reasonable request. *

Supplemental Material

Supplemental material for this article is available online.

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