Reflections in the Shadow of Death: Values,Relationships,and the Search for the Meaning in the End-of-Life Care

Study Design

This study employed a qualitative approach, collecting data through a structured questionnaire using the Individual in-Depth Interview (IDI) technique. The research adhered to the principles of Enhancing the QUAlity and Transparency of Health Research (EQUATOR) guidelines, specifically the COnsolidated criteria for REporting Qualitative research (COREQ).

The research tool, 4You (version 1.0), comprised four main questions:

(1) If you could give someone advice, what would it be?

In addition to these questions, the structured interview included inquiries about gender identification, age, and medical diagnosis. Closed questions regarding patients’ perception of support from loved ones and religious involvement were also included, with response options “yes,” “no,” and “difficult to say.”

Setting

The study involved four hospice facilities in Saint Christopher’s Oncology Hospice Foundation in Warsaw and Bramki, Saint Father Pio’s Hospice in Puck, and Bishop Czeslaw Domin’s Caritas Hospice and Care Home in Darlowo. The data were collected between September 23, 2022, and September 11, 2023. Three psychologists, including one who is a priest, conducted the face-to-face interviews, without third-party participants. These psychologists were known to the patients, and they were employed at the respective hospice facilities and possessed extensive experience in working with end-of-life patients.

Participants

Purposive sampling was selected for data collection. The study enrolled adult patients who were under hospice care at the time of the study. Inclusion criteria were based on each patient’s consent for the interview, and psychophysical condition, confirmed by the attending physician and/or psychologist before inviting to participate in the study. Exclusion criteria included among others, lack of consent for the conversation and psychophysical condition that prevents active participation in the study (for example, limitations in verbal communication, shortness of breath) (Appendix 1). Patients were provided with information about the study design and procedures. Two patients declined to participate without stating a reason. In addition to the inclusion and exclusion criteria, the selected research sample of 45 participants was based on two parameters: (1) the place of conducting interviews (4 hospices), (2) the time of conducting interviews (from September 2022 to September 2023).

Ethical Considerations

The study participants were informed about the assumptions, objectives, procedure, duration, and methodology of the research. Each participant was asked to provide informed consent for participation, which they signed. Participants were informed of their right to withdraw from the study or discontinue the interview at any time. Participants were assured that any identifying information in the transcripts would be anonymized or pseudo-anonymized. Informed and voluntary consent was obtained from all participants whose statements were included in the analysis.

The research received positive evaluation and approval from the Bioethics Committee for Scientific Research at the Medical University of Gdansk (consent no. NKBBN/385/2022). The study was conducted under the supervision of the Data Protection Officer, in accordance with the provisions of Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons regarding the processing of personal data. The procedures followed were in accordance with the Declaration of Helsinki of 1975, revised in 2000.

Data Collection and Analysis

We conducted a cognitive analysis of the participants’ statements, identifying key recurring meanings. Cognitive content analysis assumes that language choice is linked to cognitive structures and processes (Lakoff & Johnson, 1980). This model presents language as a means through which perceptions of the world and internal experiences manifest, influencing how individuals think, feel, and interpret reality (Reber & Reber, 2005).

Using an inductive approach, we developed a categorization of the statements (Ciemins et al., 2015; Kyngas, 2019). The inductive approach was chosen as data operationalization. With this strategy, we intended to analyse patients’ responses with their narrative context and quantify them as research data. Data were analysed using open coding separately within each of the four questions (Appendix 1). Three members of the research team independently verified and categorized the statements. The three team members were looking for the most frequently occuring codes, and then creating grouped categories from them. Subsequently, a consensus-based agreement on the categories was reached.

For statements related to giving good advice, we identified 10 categories. Statements referring to a sense of pride were classified into 9 categories. Expressions of gratitude were categorized into 12 areas. Reflections related to self-directed appreciation were described using 11 categories.

Additionally, regardless of the specific questions asked, we conducted a meta-analysis of the statements based on the identified categories (Timulak, 2014). Through the inductive method, we distinguished four general categories concerning relationships, attitudes, life and health values, and other (unclassifiable) aspects. This allowed us to reveal the four most frequently recurring themes in patient interview content. Statistical software Statistica 13.1 was used. The categories presented in the Results section are based on the most frequently appearing codes (with examples of statements).

Question 1 – Advice for Others

Patients were asked to provide advice they could give to others. From the responses (n = 45), we identified 11 categories (Supplement 1). These categories appeared a total of 67 times in the respondents’ statements. Some statements conveyed multiple meanings. The most frequently categorized advice included caring for one’s health (n = 9; 13.4%), maintaining optimistic thinking (n = 9; 13.4%), and embracing life’s joys (n = 9; 13.4%).

Here are examples of tips related to caring for health:

Eat healthy and get tested. That would probably be the most important thing. Eat healthily and get tested. To detect cancer as quickly as possible if necessary, Man, 52 years old

Similarly, respondents frequently emphasized the importance of optimistic thinking:

Always be positive and think that everything will be fine. It really helps, Woman, 67 years old

We also observed a consistent theme in statements advocating for enjoying life:

You have to enjoy life as it is and make the most of it, Woman, 75 years old

Question 2 – A Sense of Pride

In the subsequent question, patients were asked about their personal sources of pride. From the responses obtained (n = 45), we identified 9 categories, appearing a total of 58 times (Supplement 2). The most frequently mentioned sources of pride included children and their upbringing (n = 24; 41.4%), their own life accomplishments (n = 6; 10.3%), and their spouse (n = 5; 8.6%).

Patients who expressed pride in their children most often answered this question directly, using concise noun forms (e.g., ‘children’ or ‘daughter’):

My basis of pride comes from my wife and children. Without them, I wouldn't exist at all. I can't imagine life without them, Man, 33 years old

Some statements justified their sense of pride:

I’m proud of my caring daughter who supports me during difficult moments, Woman, 75 years old

Statements regarding pride in one’s life are often centered around relationships with loved ones. However, two statements focused on achievements outside of personal relationships:

I take pride in living as many years as I have and achieving various milestones, Woman, 71 years old

Question 3 – Feeling Grateful

From the responses to the question about feelings of gratitude, we identified 13 categories present in statements from 62 patients (Supplement 3). Most frequently, respondents expressed gratitude for the support they received in their lives (n = 15, 24.2%). They often highlighted gratitude for the very existence and opportunity to live (n = 12; 19.4%), as well as appreciation for those who cared for them during their illness (n = 8; 13.0%).

Patients frequently articulated gratitude for the support they received:

I’m grateful for the support, especially from my wife and children. They’ve been with me throughout this illness, providing constant support, Man, 52 years old

Some patients expressed gratitude for the simple gift of life itself:

I’m grateful for the chance to live a part of life, to have survived and experienced what I have, Woman, 39 years old

There were also expressions of gratitude for the care received during illness:

I appreciate the kindness I've experienced in hospice. The staff are respectful and attentive. Overall, it's been very good here, with service as a priority, Woman, 79 years old

Some statements encompassed multiple threads of gratitude, emphasizing interpersonal relationships:

I’m grateful for my life, for what my parents provided. I'm thankful for my wonderful husband, who supports me daily, as well as for my sister and friends. My family has been incredibly supportive throughout, Woman, 62 years old

Question 4 – Thanks to Yourself

In response to our question about thanking oneself, we identified 11 categories from the statements of 53 patients (Supplement 4). The answers varied, reflecting personal stories and perspectives, with the “other answers” category being the most frequent (n = 13, 24.5%).

Somehow, I blame myself for the past ten years, for calming down so much. I’m not as wild anymore, not getting into unnecessary fights. I’ve learned to avoid unnecessary conflicts, Man, 33 years old

Among the selected categories, the most common (n = 11, 20.8%) related to thanking oneself for mental strength and perseverance:

I would thank myself for not giving up, for being open to everyone, for managing things like rehabilitation or sanatorium stays, Woman, 67 years old

The second most frequent category (n = 6; 11.3%) included narratives of thanking oneself for life:

I thank myself for being alive, for having a husband who supports me through this illness and so on, Woman, 62 years old

The third category (n = 4; 7.4%) focused on thanking oneself for raising children:

I thank myself for raising my children. Thank God they are healthy. As for myself, well, for everything, Man, 56 years old

Meta-Analysis of Patients’ Statements

In this stage of analysis, we aggregated all codes across the 4 interview questions. We were focusing on the most frequently occurring codes and grouping them into themes (Timulak, 2014) (Supplement 5). The analysis revealed that respondents’ answers, irrespective of the question asked, most commonly centered around relationships with others (n = 72; 29.9%), personal attitudes (n = 67; 27.95%), the value of life and health (n = 46; 19.2%), and other meanings that could not be categorized under a specific meta-category (n = 55; 22.95%).

Discussion

The increasing number of reports underscores the role and significance of the existential dimension in therapeutic outcomes (Costa et al., 2019; Coward, 2003; Gurzynska et al., 2024). There is a growing demand to integrate the spiritual-existential domain into medical interviews for patients facing life-threatening diseases (Puchalski & Romer, 2000). Research indicates that a sense of meaning is crucial for resilience, influencing higher life satisfaction and value assessment, as well as enhancing the ability to tolerate physical pain symptoms effectively (Brady et al., 1999; Costa et al., 2019). Moreover, it diminishes the severity of depression, hopelessness, and the desire for hastened death (Kissane et al., 2001). Kissane et al. (2001) emphasize that feelings of hopelessness, loss of meaning, and existential suffering constitute a distinct construct separate from depression, termed “demoralization syndrome”. In contrast, Breitbart (2003) observed that clinical depression affects only 17% of patients nearing the end of life, highlighting its differentiation from feelings of hopelessness and loss of meaning. Conversely, findings from Davis et al. (1998) suggest that finding meaning and benefits amid the loss of a loved one can alleviate tension and foster adaptive coping mechanisms.

Interviews conducted using the 4You framework revealed that participants in the study primarily focused on two key areas: attitudes (including optimistic thinking, mental resilience, perseverance, personal achievements, and self-worth) and values (such as life, honesty, and the pursuit of goodness and diligence), as well as relationships (with loved ones and caregivers).

Regarding responses to the question about advice for others, the predominant categories highlighted solutions focused on fostering a sense of agency and control over one’s life. These themes resonated with Seligman’s ideas on optimism and served as a contrast to learned helplessness (Seligman, 2019). Analysing the respondents’ statements regarding the sense of pride, we revealed that the patients’ awareness was most often directed towards the sense of pride in their loved ones, children and spouses, and themselves when it concerned caring for others and themselves. The sense of pride is considered one of the psychological resources influencing the affirmation of self-esteem and constructing other positive emotions and adaptive strategies (Tracy et al., 2010).

The experiences of gratitude that patients expressed were related to supportive relationships. According to research, awakening this type of awareness may result in an increase in life satisfaction and a reduction in symptoms of depression and hopelessness (Costa et al., 2019). In the context of social support, it may increase the quality of palliative care (Aparicio et al., 2017). Thanking yourself is a construct that directs attention to a sense of gratitude and pride in yourself. Our patients’ responses were highly individualized and rooted in personal perceptions of their own life histories. Regardless of the type of gratitude construct (cognitive and/or emotional) included in the responses, it can be assumed that it could induce an improvement in patients’ well-being (Cunha et al., 2019). If we summarize the most common categories and present them in the form of directive guidelines, we will learn that from the perspective of the end of patients’ lives, the most important thing was to: take care of their health, think optimistically, be persistent, enjoy life and take care of their loved ones.

From analysing respondents’ statements, it can be concluded that 4You appeared to stimulate the “will to meaning,” as articulated by Frankl (1967), fostering a desire to uncover meaning in one’s life story. Moreover, the interview questionnaire demonstrated to patients their significant influence on shaping their life narratives. Our study found that this impact was evident in 92% of cases, encompassing 166 statements, with each question framing a distinct narrative (N = 180). In addition, 15.5% (n = 7) of patients requested further conversation, feeling compelled to share more of their stories. 4You also proved instrumental in helping patients realize that their stories held significance not only for themselves but also for their loved ones, whom they may have been unable to thank, express gratitude toward, or make them proud. It can be viewed as a framework for a “spiritual testament” that may bring solace to the patient’s loved ones after their passing.

Strengths and Limitations

Our study provided further insights in reflections and experiences of dying individuals. Its value lies also in involving psychologists experienced in palliative care. The study resulted in designing the improved version of 4You 2.0 interview questionnaire, with developed instruction and recommendations for use. Despite the above strengths, study has its limitations. Firstly, interpreting responses was challenging because the psychologists involved in the study also conducted therapeutic interventions. This dual role led them to ask clarifying questions, steering patients towards more positive interpretations. In such cases, we prioritized categorizing initial, independent statements as they were deemed most important sociologically. Secondly, the study’s limitations included using questions in formats different from the original interview questionnaire, such as general inquiries like ‘What makes you grateful in life?’. This deviation happened occasionally when patients struggled with the original question formats. Additionally, respondents often “rooted their narrative” in their initial statements and did not modify it in response to subsequent questions. While this may not be problematic from an intervention perspective, it is important for research interpretation as it reflects the natural flow of patient storytelling.

Furthermore, a limitation of this study is the deliberate exclusion of questions exploring personal regrets, mistakes, or missed opportunities. On one hand, this design choice means the data do not capture a comprehensive profile of the patients’ life reflections. However, our primary ethical priority was to minimize the risk of inducing acute anxiety or feelings of hopelessness among end-of-life care patients, which could negatively impact their immediate psychological well-being. Importantly, due to this approach, the study also served as an intervention, successfully helping patients recognize the valuable, meaningful, and positive aspects of their life stories.

Practice Implications

Implementing 4you in clinical practice can support patients by focusing their attention on meaningful and valuable stories from their lives. It can be used by medical staff, psychologists, and clergy to initiate conversations and build relationships with patients. It can also be used to educate and train medical staff, opening the perspective of health professionals to be present and accompanying their patients. The 4You questionnaire can be used as an educational tool for medical students. By analysing patient responses, future specialists could more effectively familiarize themselves with the situational context of end-of-life care patients and learn their perspectives on the healthcare situation they will face. Finally, it can support families and loved ones by providing a framework for creating a recording or letter that serves as a spiritual testament.