Beliefs and values

To understand the patient’s and family’s illness experience, the IDT must actively listen and question to gain insight about the family’s core beliefs and values. Values are the personal beliefs that the patient and/or family consider important and to which they are emotionally attached. Values are subjective, may evolve over time as a result of life experiences, and can influence specific behaviors and personal goals. Values that develop during childhood often are derived from the experiences a person has in his or her family, culture, religion, or community. They can also evolve from unchallenged or unexplored assumptions. All of these values make up an individual’s belief system.

Beliefs and values give meaning to a person’s life. They influence the patient’s and family’s perceptions about how things are and how things should be. Values may dictate preferences in some circumstances. Patients with life-threatening conditions and their parents apply a set of values to guide decisions about medical care.^1,2 Decisions made by patients and families about whether a certain treatment is desirable are often based on their determination of the treatment’s positive or negative qualities and whether it is perceived as beneficial. For those dealing with a progressive or incurable illness, these judgments may occur in the context of values that reflect the dual goal of seeking disease-directed therapies and comfort-directed care.³

Identifying and understanding the patient’s and family’s beliefs and values is an important palliative care skill that helps direct efforts toward improving the quality of end-of-life care. Having open and thoughtful conversations about the patient’s and family’s goals of care can be an effective approach to understanding their values and priorities. These conversations may also help patients and families who are not fully aware of the values they hold deeply and which may guide decisions about their care. In a study examining end-of-life care preferences, parents of seriously ill children identified the following as important end-of-life priorities: honest and complete information, ready access to staff, communication and care coordination, emotional expressions and support by staff, preservation of the integrity of the parent-child relationship, and faith.⁴ Moreover, when considering withdrawal of artificial life-sustaining support, parents placed the highest priorities on prognosis, quality of life, and their child’s level of comfort.^5,6 Honoring these personal values may facilitate the family’s ability to maintain a sense of dignity and integrity.

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.

Sadness and depression

The experience of serious illness is always deeply emotional. Intense feelings greatly influence patients’ and families’ sense of hope and affect how they make decisions about their medical care.

Expressions of hopelessness are often accompanied by profound sadness, defined as an emotional state of varying intensity characterized by feelings of unhappiness.¹² Sadness, sorrow, or desolation are normal responses when individuals face a threat to meaningful relationships, a loss of their personal values, or feelings of loneliness and isolation. Sadness in children may be their mourning the loss of the life they previously had (e.g., interacting with friends, playing, attending school) as well as their threatened future; parents mourn the loss of the dreams they held for their child.

Learning to distinguish between sadness and depression is important in palliative care. Depression is a mood disorder characterized by the loss of self-esteem, feelings of guilt, anger, and despair, and negative views about one’s own future. A profound sense of hopelessness at times may be accompanied by suicidal ideation.¹⁰ Symptoms of depression include fatigue, insomnia, decreased performance at school or work, loss of appetite, loss of interest in activities previously enjoyed, and social withdrawal. In general, the source of sadness is more specific than that of depression, and a sad person is usually able to experience pleasure and happiness about other aspects of his or her life. For a depressed person, sadness and hopelessness are broader and more pervasive. Although encouraging patients and families to openly share their feelings and reconnect with loved ones may alleviate their sadness, concerns about depression may warrant a psychiatric consult, counseling, and pharmacotherapy.^13,14