An important universal value shared by seriously ill patients and their families is the presence of consistent and meaningful relationships within the family unit and with the care team.⁷ Relationship-based value judgments consistently inform patients’ preferences and decision making.⁸ Sometimes the expressed values of patients and families differ from those of their healthcare providers. In a study to ascertain parents’ and physicians’ assessments of quality of end-of-life care for children dying from cancer, Mack et al, found that for parents, doctor-patient communication is the principal determinant of high-quality physician care.⁹ Communicating with honesty and sensitivity about what to expect at the end of their child’s life, communicating directly with the child when appropriate, and preparing the parent for circumstances surrounding the child’s death were all cited by parents as high-quality care. In contrast, physicians’ ratings of high-quality end-of-life care depended on biomedical variables such as less pain and fewer days in the hospital rather than relational parameters. Consequently, clinicians are advised to think about what they consider important in the care of a patient at the end of life and acknowledge the risk of imposing their own value system in the context of a therapeutic alliance with a patient and family facing end-of-life care issues.

Hopes and wishes

In talking with patients and their families about hope, it is important for clinicians to distinguish being hopeful from wishful thinking, having unrealistic expectations, or feeling optimistic.¹⁰ Palliative care clinicians can help patients, families, and their healthcare providers by listening without judgment to their experiences and helping to solidify a deeper understanding of these concepts as they evolve in the context of serious illness. Ultimately, hope influences the decisions made by patients and families facing a life-threatening illness.

Hope is a response to severe distress that allows a person to adapt to a situation, such as the realization that their child has an incurable illness that cannot be controlled. Hope presupposes an accurate assessment and acknowledgment of the reality of a situation, as determined by the evidence made available through thoughtful conversations about prognosis. A hopeful person understands the present reality but is open to a future full of possibilities, rendering him or her less likely to take a position of certainty about what the future will bring. The psychological benefit of hope may be derived from the person’s openness to possible alternatives in the presence of uncontrollable forces, a sense of connection to someone or something beyond himself or herself, and the ability to surrender control to a higher being or force (that is, generalized, unconditional hope). For instance, parents may hope for a miracle cure while making medical decisions guided by the expectation that their child will die, the basis of which is previous conversations about the child’s poor prognosis for survival.

Hope is also the belief that there will be a positive outcome related to circumstances in the patient’s and family’s lives. A hopeful state arises from having a sense that what is desired will indeed happen. Here, the psychological benefit of hoping during times of trouble and uncertainty may result from the expectation that what is hoped for will be fulfilled (i.e., specific, conditional hope). For example, the parent of a child whose death is imminent may hope for a miracle, and the expectation of its fulfillment may facilitate personal coping but prevent decisions about withholding potentially harmful treatment with curative intent. In this scenario, additional guidance may be needed to help reframe the focus of the parents’ hope and transition them to a more realistic stance, such as hope for comfort at the end of life.

Within a patient’s or family’s construct of hope, they may have wishful thinking and optimism that helps them find meaning in the situation and allows them to face each day with some purpose and balance. Wishful thinking identifies a desire for more concrete objects, actions, or goals and may or may not be based on an accurate interpretation of reality. Wishful thinking involves personal determination, effort, and the need for control, all of which may result in experiencing a sense of distress. For instance, parents may wish for one more family vacation, or a teen may dream about his or her first car. However, in the presence of a hopeless situation such as imminent death, a person’s expressed desire for treatment with curative intent, even if considered medically inappropriate, would be more consistent with wishful thinking rather than possessing hope. The expression “to hope against hope” is used to describe a hope for something that is not likely to be fulfilled.

Families facing the end of a life often hope for a miracle and sometimes ask clinicians if they believe in miracles. This question is most often meant in a global sense, as they are simply seeking reassurance that anything is possible. It may be useful for the family to articulate perceived differences between the hope that they obtain from having a sense of connection with a higher power and the expectation of any benefit resulting from a specific medical intervention. Expressions of optimism by patients and parents may also seem unrealistic to healthcare providers when verbalized in the midst of dire circumstances. Expressions of optimism differ from hope in that they are often a reflection of the mood of the patient or family member and involve self-assertive statements such as, “I’m OK!” Such comments are often in contrast with the perceptions of others who wonder how that can be true.

It is not uncommon to hear staff members worry that parents are not “getting it,” have not been told about the child’s prognosis, or are in denial when the parents make hopeful, optimistic, or wishful statements. A communication schism may occur, and the therapeutic alliance can be severely compromised, if parents are denied the opportunity to express their hopes and wishes. Patients and families may express their hopes and wishes interchangeably, and many use the language of hope in a religious or spiritual context. In the presence of progressive illness, hope can be a powerful coping mechanism, and caregivers must be careful not to strip it away through careless confrontation or premature conversations. It is difficult, however, to differentiate between expressions of wishful thinking and those of hope, and in practice, patients and families often experience a combination of the two. Although helping the patient or family to reframe hope may be appropriate in some circumstances, clinicians must do so only in the context of a relationship based on trust and always remain respectful of the patient’s and family’s overall experiences. A clinician’s responsibility is to acknowledge hope and gently reframe the patient’s and family’s expectations by providing relevant clinical data. In a study to evaluate the relationship between prognostic disclosure and hope, Mack et al. found that parents who received more information about the patient’s prognosis and had high-quality communication were more likely to report communication-related hope, even when the likelihood of a cure was low.¹¹ Such conversations may allow for a balanced perspective of hope for cure and expectations of benefit from treatment.

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