The patients of the qualitative analysis appeared to be focused on living in the present, prolonging it to what it may offer, which is a future, although uncertain and not long. Intensification and relative extension of the present is correlated with some distancing from the condition and the death threat, in which meaning and value of life are emphasized, followed by hope and life continuation. Coherently with these reports, our quantitative analysis showed that the meaning of life had a positive impact on quality of life and on the patients’ mental health, indicating a positioning of hope and an assertive appreciation of life. Commonly, health professionals become perplexed when they see this positioning, as they are dealing with patients whose lives are threatened by an incurable oncological disorder (43). This scenario points out to the importance of better understanding the elements present in experiencing this type of illness and, based on this, extending reflections on, and practices of, Palliative Care in Oncology.
Being focused on living was a position similarly identified in other studies, which observed some connection with the present life through strategies of adaptation, emphasis on positive aspects of life, and activities that need to be accomplished by the patients themselves (13, 14, 44, 45). However, most of the studies do not clearly show how those elements are interconnected, aspect which is evidenced here due to the use of the phenomenological approach. Deliberately avoiding thoughts and speeches about the incurable disease was one of the elements of their personal positioning, an attitude that is based on strengthening connections with life and possibilities of fulfillment; frustration is then avoided when they do not focus on limitations and on imminent complications, followed by death. Likewise, Arantzamendi et al. (44) confirm that patients deliberately control thoughts about the disease/death in order to enjoy the present moment, feeling that these thoughts are not useful. The authors observed a return of conflicts when negative thoughts are intrusive and persistent, leading to anxiety, fear, and anger, which hindered the process of disease acceptance. The patients of our study showed to be aware of the consequences, mentioning some concern about having mental disorders, such as depression. This symptom is the most prevalent amongst patients in Palliative Care, being present in 21% of our sample, similar to worldwide and Brazilian numbers. It may lead to intense and prolonged emotions due to recurrence and confrontation with finitude (46–49). Anxiety was associated with < 60-year-old patients, in accordance with O´Connor et al. (50); however, this data does not seem to be consistent in literature, as results are diverse (50, 51). Avoiding thoughts about the disease and death, supported by connections with possibilities of enjoying life, may help patients to acknowledge and manage their personal resources, such as their ability to escape from certain situations and to focus on possibilities of accomplishment (6, 45).
We observed that the positioning of avoiding daily thoughts about their incurable condition is based on their fights. Likewise, other studies reported such deliberate efforts, which demanded great energy, determination, and resistance (13, 17, 43, 45). The act of fighting shows the “defiant power of human spirit”, which means that an individual is not determined by their numerous and rigorous conditions and hence is able to regulate their actions (41 pp. 6). The fights of our patients present some modalities, and one of them is the accomplishment of tasks/responsibilities, which was similarly reported by Willig and Wirth (13). Differently, other studies found that activities appeared only as some guidance in life (14, 44) or as something incompatible with the illness condition, being used as an escape from reality (43). Our results suggest that the latter interpretation was inattentive and phenomenologically debatable, as the patients, attached to meaning of life, are aware of the threat to which they are subjected and throw themselves into activities that have a close correspondence with their past, present, and future daily lives. Similarly, studies point out that daily activities are a powerful and positive influence to fight the disease, allowing some normality, identity, and adaptation to changes (13, 45, 53). Likewise, our quantitative study showed that the more functional patients, due to oncological treatment, had their symptoms of depression reduced. Studies usually emphasize the contrary, that is, lower rates of depression associated with a better quality of life (54, 55). However, the association found in this study is also valid, because a more functional patient may pursue activities that satisfy them, resulting in pleasure/happiness as a collateral effect (6), which helps reduce depression. Future studies could investigate this relation between quality of life and depression.
Sensitivity to life, identified in this study, is understood as nurture of their fight, allowing patients to perceive more clearly their possibilities of actions, as well as their affections, the aesthetic aspect of the environment, and the meaning of life. We found similar reports in the literature on the experience of life moments intensified by a connection with the present (13, 14, 45). Our study adds that sensitivity to life is part of this process, enabling patients to live the present moment more intensely.
Another element of our patients’ experience is the reason to live, even not knowing until when this is possible. Patients with advanced cancer may have deep insights concerning essential goals in life (56), suggesting the human ability to pursue and find meanings in life and in sorrow (6, 57). This search for meaning, according to Frankl, is a motivation characteristic of the human beings, who dynamically pursue their more important aspirations; when satisfied, their life becomes happier and healthier (8, 58, 59). Haug et al. (14) identified meaning as a central element in the experience of their elderly patients, helping them to handle decline and loss and protecting them from some age-related difficulties. Our quantitative results verified the relation between meaning of life, a better quality of life, and a decrease in anxiety and depression, corroborating the literature on this theme (9–11). Meaning of life is also associated with a decrease in physical symptoms, which had not been reported in the literature yet, and it is a relevant finding, as a rigorous control of physical symptoms is one of the principles of Palliative Care to achieve quality of life (1, 2). Studying HIV patients, Pontes (60) similarly found that meaning of life was correlated with improvement of their affections, which was consequently associated with better ratios of lymphocytes CD4+/CD8+. Theoretically, according to Logotherapy and Existential Analysis, this relation is explained by fulfillment of meaning, which leads to pleasure/happiness in psychophysical levels, being a concomitant and non-intentional phenomenon (6, 58, 59). However, further studies in this area are necessary to clarify and prove this relation. Another new and relevant result of our study is the finding that meaning of life or its loss are not associated with the patients’ sociodemographic variables, which was also observed by Dobríková et al. (10) with Slovenian patients. These results support Frankl’s (6, 58) anthropology, who states that the will to meaning is ontological. Nevertheless, further studies in other cultures are necessary.
We found that meaning of life was pervaded by an intense will to life continuation, which revealed to be interconnected with religious beliefs when the patients attributed the possibilities of living to the divine, giving them hopes. The phenomenology of the religious experience defines it as a contact with a Force that is superior and supports the individual who contacts it (61). Similar results were found in Brazilian studies (62–64), as well as in other studies conducted in traditionally religious countries (17, 64). In contrast, studies conducted in countries whose population does not traditionally show religious beliefs, such as great part of Europe and North America, found that patients’ belief in life continuation was based on performed or available medical treatments (13, 14, 44). Hope contributes for patients to be active and motivated, even in extreme contexts, being a central element in the process of resilience (14, 16, 56, 66). In our study, the belief in life continuation is supported by the attentive and affectionate presence of the medical team and of their beloved ones, who, together with the patients, do not thematize the illness and similarly believe in or empathically accept the patients’ positioning. Affective relations, which show empathy and will to spend time with the patient, help to keep hopes alive (10, 14, 16, 67). It is of utmost importance that the health professionals be aligned with the patients, supporting their positioning and paying attention to their real needs (68). Our quantitative results revealed different associations, between religions, in one of the scales for quality of life; however, the higher number of Catholics (n = 47) and Protestants (n = 14) may have led to biased results. There are no similar findings, in the literature, on this difference and its effect on quality of life, which may be clarified only by further studies. Therefore, we emphasize the therapeutic aspect of hope that comes from faith, in Palliative Care, questioning the interpretations that assume it as a denial or a escape from reality and reject faith as a support for believing in life continuation or for changing the situation, as pointed out by Reis, Farias and Quintana (69).
By connecting the belief in life continuation with religious faith, the will to live appeared as another element that gives meaning to life. This will to live was also reported by Neirop-Van Ballen (18) as a primordial source of hope, corroborated by comprehending the connection between the elements. Will to live is not discussed very clearly by most authors but discretely appears when authors mentioned that patients held on to life and wished to live intensely (13, 14, 45). These life experiences are similar to Frankl’s (6) vision, who states life and its unconditional meaning under any circumstances as a fact.
The number of patients in our quantitative study did not allow us to perform a randomized design, a limitation due to the exclusion of 51% of the invited patients who were not aware of the prognosis, as this was an inclusion criterion. Regarding their religious affiliations, our sample did not contain atheists or agnostics, which could have different results on the faith in life continuation or on the way of handling illness and death by Brazilian patients. Therefore, further research containing this population is necessary. Although our quantitative study identified a statistically significant direct and indirect association between the variables, it mostly did not reveal clinical relevance when we observed reliability levels and confidence intervals. This might have been due to the Purpose in Life-Test, because we observed some comprehension difficulties and discomfort on the part of the patients when answering it. We suggest that future studies consider changing the instrument to assess meaning of life and its relation with the same variables of this study.