Hope in a time of uncertainty

When individuals with advanced illness encounter declines in their physical function, they experience worry about their future, what death entails, and what happens after death. Health insecurity frequently revolves around constantly declining physical abilities (Nissim, Reference Nissim2008) and thoughts of a shortened lifespan and the finitude of death (Banning & Tanzeem, Reference Banning and Tanzeem2013; Nissim, Reference Nissim2008). Physical changes commonly spur emotional, social, and spiritual distress in knowing how to prepare for the future. Additional uncertainties arise when medical providers fail to educate individuals about their illness and what may happen as their disease progresses (Benzein et al., Reference Benzein, Norberg and Saveman2001).

Medical providers hold significant power in fostering and depleting hope through the communication of disease information, prognosis, and anticipated disease progression. The medical team can foster hope by treating the person who has cancer like a human being and by answering questions (Karlsson et al., Reference Karlsson2014). The team can also provide affirmation about patient's progress and reduce feelings of vulnerability (Karlsson et al., Reference Karlsson2014). According to Nierop-van Baalen and colleagues (Reference Nierop-van Baalen2016), hope holds a purpose in preventing people from sliding into depression. Even small amounts of hope, such as prolonged life, increased quality of life, and a peaceful death, can help to combat the inevitability of death, present momentary options for escaping the unbearable, and fend off hopelessness and depression (Breitbart et al., Reference Breitbart2000; Eliott & Olver, Reference Eliott and Olver2007; Mystakidou et al., Reference Mystakidou2008; Nierop-van Baalen et al., Reference Nierop-van Baalen2016).

In contrast to hope, pessimism can remove a person's sense of agency (Eliott & Olver, Reference Eliott and Olver2007) and facilitate feelings of increased anxiety, hopelessness, and depression (Breitbart et al., Reference Breitbart2000; Reb, Reference Reb2007). As feelings of physical impairment worsen, social/spiritual wellbeing and hope may decrease (Brown, Reference Brown2005; Lethborg et al., Reference Lethborg2006) and demoralization and depression may increase (Lethborg et al., Reference Lethborg2006). Feelings of physical pain and abandonment by the medical team act as triggers of despair (Nissim, Reference Nissim2008). Conversely, those who trust their providers and can share their intimate concerns with them feel relief and the potential for hope (Banning & Tanzeem, Reference Banning and Tanzeem2013; Olsson et al., Reference Olsson2010). Healthcare providers must frequently navigate the tenuous balance between imparting realistic prognostic information and fostering realistic hopefulness among those with advanced cancer.

Challenge of prognostication

Many factors can influence accuracy in prognostication. This is especially true in the rapidly evolving field of oncology. Despite clinician access to various prognostic tools, significant variances in survival prediction remain (Fallowfield et al., Reference Fallowfield, Jenkins and Beveridge2002). Over the past decade, momentous advances in cancer treatments have emerged, making the aptness of prognostication even more complex. As the landscape of oncology optimistically transforms, so do options available for patients with advanced cancer. Precision medicine advances allow for options that often result in less toxicity and ultimately improved rates of survival for patients (Schwaederle et al., Reference Schwaederle2015). Hui (Reference Hui2015) best summarizes the complexities in survival predications in oncology by reporting that prognosis is a process, rather than an event. Therefore, patient-centric communication and clinical decision-making must be an ongoing and adaptable process in oncology.

Desire for information

Health professionals’ opinions have varied regarding the best practices in communicating diagnosis, prognosis, and expected disease progression for patients with advanced disease. The ongoing concern is that sharing difficult information may deplete patients’ will to live and diminish their hope. Furthermore, the unpredictability of an individual's illness trajectory can make health professionals leery of sharing prognosis information (Fallowfield et al., Reference Fallowfield, Jenkins and Beveridge2002). However, extant literature consistently supports that most patients want to learn about their illness, prognosis, treatment course, and how their illness could affect their daily functioning (Clayton et al., Reference Clayton2008; El-Jawahri et al., Reference El-Jawahri2014; Hagerty et al., Reference Hagerty2005a; Innes & Payne, Reference Innes and Payne2009; Umezawa et al., Reference Umezawa2015). In particular, patients tend to want qualitative information more than percentages and statistics (Innes & Payne, Reference Innes and Payne2009).

Most patients desire to be told complete or moderate amounts of information about their prognosis (Schofield et al., Reference Schofield2001). Patients expressed varied preferences in the timing and dose of information that they receive, with some preferring to have difficult conversations spread throughout their treatment (Deschepper et al., Reference Deschepper2008) and others preferring details about life expectancy and treatment decisions close to the time of diagnosis (Schofield et al., Reference Schofield2001). In addition to the breadth, depth, and timing of communications about their illness and disease progression, studies have reported that patients want physicians to be realistic, patient, trustworthy, reliable, tactful, understanding of psychosocial needs, provide time to ask questions, and individualize their prognosis (Hagerty et al., Reference Hagerty2005b; Sapir et al., Reference Sapir2000).

Communication and patient outcomes

The ways in which healthcare providers communicate information to those with cancer affects both the alliance between the patient and provider and the overall well-being of the patient. Meeting patients’ desires for detailed prognostic information results in enhanced levels of satisfaction (Heyland et al., Reference Heyland2009; Schofield et al., Reference Schofield2003) and communication between the patient, family members, and providers (Nakajima et al., Reference Nakajima2015), including end-of-life care wishes (Heyland et al., Reference Heyland2009). The utilization of communication guides increases asking questions about prognosis, understanding illness trajectory, and recalling information (Brown et al., Reference Brown2001).

Negative outcomes arise when patients have limited understanding of their prognosis, including unwanted or unnecessary medical care, including hospital admissions, increased expenses in the last week of life, and death at the hospital (Aabom et al., Reference Aabom2005; Zhang et al., Reference Zhang2009). Patients with limited insight into their prognosis have less time to plan for their futures, more anxiety about their imagined horrific fate, and are less likely to communicate end-of-life decisions (Fallowfield et al., Reference Fallowfield, Jenkins and Beveridge2002). Common negative psychological and spiritual impacts of not receiving information about disease trajectory included anxiety, depression, and situational and religious well-being (Fallowfield et al., Reference Fallowfield, Jenkins and Beveridge2002; Leung et al., Reference Leung, Chiu and Chen2006); however, El-Jawahri et al. (Reference El-Jawahri2014) suggested that increased awareness of advancing illness and symptomatology may result in patients’ needs for enhanced psychosocial support for their coping process.

Reframing hope within prognosis communication

Realistic understanding of their prognosis may help individuals with advanced cancer to reframe their goals to those that are more attainable when considering physical and emotional energy/abilities. Reframing hope within the context of a life-threatening illness involves an adaptive process of forming goals that are short-term, realistic, and attainable (Eustache et al., Reference Eustache, Jibb and Grossman2014) and require less physical strength (Benzein et al., Reference Benzein, Norberg and Saveman2001). Practitioners can engage patients and their families in identifying what they are hoping for now, in the present context of their illness. This exploration can only occur if they are fully aware of their prognosis. As previous goals for the future start to appear unrealistic, healthcare providers may assist those with advanced cancer in the process of reevaluating their goals and creating new ones that are more realistic in relation to time and physical ability (Knox et al., Reference Knox2017). This transparent and supportive communication prompts patients and their loved ones to gather a sense of certainty about their illness, control, and hope as they prepare for the future. Hope is not antithetical to a poor prognosis but instead may be the tool with which practitioners can help patients face their shortened future.