The enormous and continuing challenge of maintaining hope in patients with advanced cancer

“Hope springs eternal in the human breast.” —Alexander Pope (1)

Hope is a fundamental and enduring aspect of human nature, and no matter how dire the circumstances, people instinctively attempt to maintain a sense of optimism and hope for a better future. In people diagnosed with advanced cancer, hope sits at the crossroads of achieving personal life goals and the realities of the illness trajectory. Hope is especially important now, with therapeutic advances enabling people to live longer with cancer.

In this issue of the Journal, Mathews et al. (2) attempt to enhance our understanding of the concept of hope and its relationship to prognostic awareness in patients with advanced cancer. More importantly, they provide us with a relatively simple and elegant road map to traverse the “minefield” inherent in palliative or end-of-life care. Through a scoping review of the extant literature on the assessment of prognostic awareness in studies of patients with advanced cancer, they address whether the concept of hope is integral to prognostic awareness assessment and what the benefits and risks associated with prognostic awareness accuracy are. Using an integrative synthesis, the authors conclude that studies assessing prognostic awareness follow 2 distinct heuristic conceptualizations. A binary conceptualization of prognostic awareness (ie, as accurate or inaccurate) is the most common conceptualization in the studies reviewed. It suggests 2 pathways: accurate prognostic awareness, which results in usual care, and inaccurate prognostic awareness, which suggests the existence of communication failures and requires improved patient-physician communication. As the authors correctly point out, however, oncologists rarely recognized when their patients had inaccurate prognostic awareness, and the remedy to provide more information would not necessarily enhance prognostic awareness. In contrast, the few longitudinal studies the review summarizes suggest that prognostic awareness does, in fact, improve over time.

A trinary conceptualization of prognostic awareness affecting hope also emerged from the review by identifying 3 possible groups: 1) aware and accepting, 2) aware and not accepting, and 3) truly unaware. The authors (2) propose that this trinary model could guide specifically tailored interventions addressing diminishing hope and suggest that more research is required. The trinary model suggests that a discordant prognostic awareness or acceptance either reflecting patient denial when aware of the true situation or truly unaware (misconstruing the physician’s message as optimistic and therefore still hoping for a cure) require specific targeted interventions in addition to the standard palliative/supportive care.

As clinician scientists with experience in psychosocial oncology, we have seen the growth and clinical significance of integrating social and behavioral science into our understanding of the patient and family experience in oncology (3). Although oncologists seek to identify and treat the tumor, the entire health-care team must always be mindful that the tumor is attached to a person. As biomedical interventions have improved, so have survival times—but not always without significant immediate or late-onset sequelae and diminished quality of life. The challenges to this evolution have been met with increasingly essential clinical, epidemiological, and health services research demonstrating the effectiveness of evidence-based psychosocial interventions that are now well integrated into the health-care team (or should be). Despite these advances, 1 of the most difficult challenges facing a physician is communicating a diagnosis of advanced disease.

Michael et al. (4) have summarized several strategies, using practical examples to influence the maintenance of hope at the end of life, and they capture the many conceptually overlapping domains described earlier (and that we paraphrase here from Table 1.3 in their publication). These strategies can be used to help patients face prognostic awareness through their reorientation toward meaningful, manageable, and realistic life goals. Strategies can include reassurance of physical and emotional comfort (through explaining the benefits of best supportive care), assuring that they will not be abandoned through strong ongoing caring relationships with the supportive care team (by emphasizing the support structures available to the patient and family), encouraging self-worth and a sense of identity (through assisting with reframing expectations to achieve meaningful outcomes), promoting personal and family values (through encouraging advance care planning and legacy work), and promoting a sense of meaning and purposeful living until the end (through preserving who one is—a person’s values, attitudes, and life’s intention—to the very end) (5). The question becomes, for which of the 3 arms recommended in the trinary model should these strategies be implemented? The more complex evidence-based psychotherapeutic interventions [eg, Dignity Therapy (6) or Managing Cancer and Living Meaningfully therapy (7)] that focus on existential and meaning-making approaches require that patients present with the capacity for self-awareness and insight (implying some form of acceptance). Where nonacceptance is present, the dialogue must be ongoing between physician and patient to offer acceptable and timely supportive interventions, as needed. Communication must be open and collaborative as the patient’s physical and psychological condition evolves. That is why continuing to “check in” with the patient is critical to understanding their prognostic awareness and acceptance. We must tailor the delivery of our messages to the person, using communication techniques that respect their information preferences, values, and goals (8). Clearly, further research should address the validation and clinical utility of the trinary model in helping clinicians choose effective interventions, enhance coping, and (by implication) optimize hope.

Mathews et al. (2) acknowledge the deep existential themes of the search for purpose, the struggle with mortality, and the importance of hope that are ingrained in patients’ understanding of their prognosis. The identification of patients who acknowledge that their condition is terminal but nonetheless express optimism for a cure illustrates the emotional dissonance that comes with facing one’s own mortality. This contradiction might be understood from the standpoint of death denial as an expression of the common human predisposition to avoid the existential realities of death (9). According to the review (2), failing to recognize palliative purpose while holding out hope for a cure may be a sign of inadequate coping. Some issues to contend with may be to figure out whether the entertained hope creates suffering or compromises aspects of medical management or the ability to function in everyday life. A denial-of-death viewpoint would stress that although hope can be helpful in certain situations, it can also act as a kind of denial, keeping people from facing death head-on. In this sense, independent from prognostic awareness, hope can be authentic or masquerade as authentic in the service of death denial (9). In this sense, one’s prognostic awareness is symptomatic of a larger context.

Further to this larger context is the extent to which we are ultimately helping the patient achieve a “good death.” A systematic review of reviews (10) has identified several conditions for a death to be considered good: relief from physical pain and other physical symptoms; effective communication and relationship with health-care professionals; performance of cultural, religious, or other spiritual rituals; relief from emotional distress or other forms of psychological stress; autonomy with regard to treatment-related decision making; dying at the preferred place; not prolonging life unnecessarily; awareness of the deep significance of what is happening; emotional support from family and friends; not being a burden on anyone; and the right to terminate one’s life. At most, only 3 conditions consider that a good death necessitates medical knowledge or resources: reducing physical discomfort and other symptoms, avoiding needless life extension, and using one’s right to end one’s own life (eg, Medical Aid in Dying, which is now legal in many countries under stringent guidelines). The remaining conditions highlight the need to rethink how the role of medicine could be minimized or other resources redirected so that individuals who are dying can receive the psychological, spiritual, relational, and practical support they desire and expect, regardless of their location, socioeconomic status, and ethnocultural background.

Mathews et al. (2) support authenticity in communication, encouraging life decisions that are coherent with one’s true self, and one’s values. Prognosis disclosure ought to be consistent with the patient’s existential authenticity and sense of personal agency. Health-care professionals have the power to influence patients’ existential viewpoints and strengthen their sense of understanding and connection. Training in existential sensitivity is necessary for health-care professionals to negotiate prognostic disclosure to review existential concepts, identify personal variances in existential viewpoints, and support candid and encouraging dialogue.

The triune conceptualization put forward in the article by Mathew et al. (2) is another good beginning. Although an elegant synthesis, however, it can hardly be the last word. Indeed, Hui et al. (11) have recently theorized that prognostic awareness and acceptance are only 2 of 5 steps along a prognostic continuum: 1) formulation, 2) disclosure, 3) awareness, 4) acceptance, and 5) decision making. This framework provides a more action-oriented heuristic, with space for the complex existential, personological, cultural vicissitudes facing patients with advanced cancer and the provision of existing or novel evidence-based interventions. Specialized training in communication skills that reflect the many individual and relational challenges facing patients diagnosed with an advanced cancer clearly is manifest. As survival times continue to increase, understanding this dialectic becomes ever more critical if we are to continue to enhance hope or, in other terms, for us to help patients optimize which goals they are willing or able to settle for.

Data availability

No new data were generated or analyzed for this editorial.

Author contributions

Zeev Rosberger, PhD (Conceptualization; Methodology; Writing—original draft; Writing—review & editing), Melissa Henry, PhD (Conceptualization; Methodology; Writing—original draft; Writing—review & editing).

Funding

No funding was used for this editorial.

Conflicts of interest

The authors have nothing to disclose.

Acknowledgements

None.