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UC Davis Health System

UC Davis Health System

From hopelessness to wholeness: UC Davis neonatologist infuses spirituality into his own brand of care

Commentary on spirituality in medical care published in JAMA

parent holding hospitalized infant's hand Jay Milstein, a neonatologist and professor of pediatrics, contends that in order to provide total patient care, both curing measures addressing the organic aspects of disease and healing measures addressing the human experience of illness are essential.

UC Davis Children's Hospital physician Jay Milstein wrote a commentary in the Journal of the American Medical Association (JAMA) that, in the face of catastrophic medical events, forging a spiritual connection among patients and their significant others can restore a sense of control, meaning and the ability to cope, "allowing patients and families to shift from a state of hopelessness to wholeness."

Milstein, a neonatologist and professor of pediatrics, contends that in order to provide total patient care, both curing measures addressing the organic aspects of disease and healing measures addressing the human experience of illness are essential.

"When cure eludes patients with devastating conditions, healing measures become of utmost importance to patients and their families," Milstein says in the commentary.

Helping families face the existential questions

"When parents learn that their newborn child has significant life-threatening problems or that their 3-year-old has cancer, they must deal with a profound sense of loss from the outset, even if death is not imminent," Milstein says. "In the face of such suffering, families may enter a state of hopelessness, lose all sense of control and meaning and become unable to cope. Addressing the cognitive and emotional needs may help restore a sense of control and meaning."

"However, those measures may not suffice. In the face of critical illness, particularly with end-of-life or life-altering situations, certain existential questions may arise: 'Why me?' 'Why my child?' 'What purpose does this serve?' 'What does it all mean?'" Milstein notes.

Since the answers "may have intangible, unanswerable qualities, formulating responses may require, or benefit from, a shift to the spiritual domain that can be defined as a concern for what exists beyond oneself and the physical world. Exploring the spiritual domain requires one to transcend one's physical, cognitive and emotional sense of reality and one's tangible world," Milstein says.

Creating a healing space

Milstein says that within a "healing space," a site of "being with," in contrast to a "curing space" — spiritual intervention can serve as a way "to restore a sense of order and meaning for the patients and their families, improving their ability to cope and to attain a sense of wholeness."

"In the process of forming a relationship with the family of a critically ill patient, facilitators (that may include a physician, a nurse, and a social worker or chaplain) may initially address the family's cognitive and emotional needs. The team may then address the family's spiritual needs," Milstein says.

"When parents learn that their newborn child has significant life-threatening problems or that their 3-year-old has cancer, they must deal with a profound sense of loss from the outset, even if death is not imminent. In the face of such suffering, families may enter a state of hopelessness, lose all sense of control and meaning and become unable to cope. Addressing the cognitive and emotional needs may help restore a sense of control and meaning."
— Jay Milstein, neonatologist and commentary author

This process may begin by first eliciting a history regarding any spiritual path that the family may follow, honoring any faith-based path, and encouraging prayer if it is consistent with their traditions and rituals, Milstein says. A facilitator can also guide each family member experientially, to use his or her own voice, touch, thoughts and feelings, with intention, to connect with his or her loved one, the universe, a higher power, or whatever source of support to which they may turn, he says.

The reference to a higher power is not to alienate the non-believer, Milstein notes. "If such a background was discovered in the initial spiritual history, the facilitator would not refer to a higher power in the experiential component, but would instead utilize the experiential connection primarily to enhance a soul-to-soul or one-with-one connection between the family and their loved one," he says.

During the experiential periods, in order to help parents or families find meaning in their experience, the facilitators "would encourage these individuals to share or explore their narratives with each other if they are comfortable doing so."

"For patients, the process of telling their stories is a way of reclaiming the self and a way of making sense of their lives. It also serves to reaffirm important relationships in their lives," Milstein says.

Incorporating spirituality into medical school curricula

Milstein notes that even though spirituality may be addressed in current medical school curricula, spiritual measures are rarely included in practice and are not fully embraced as part of conventional medical culture. A criticism of much of the research designed to assess the role that spirituality plays in physical health is that it has been conducted without a strong theoretical framework and has not demonstrated how spirituality translates into health outcomes.

Milstein suggests an explanatory model of health that may allow researchers to demonstrate how spirituality translates into health outcomes, including grief reactions, marital satisfaction and family function. In addition, using the model, the sense of control, meaning and ability to cope, marital and social support, perception of the situation and the relationship between the elements of the model can be tested.

"Establishing the value of a spiritual intervention to shift from a state of hopelessness to wholeness through study may further the likelihood of its inclusion earlier in care by more practitioners," Milstein says. However, short of proof, the rationale behind its inclusion in the face of the existential issues raised in crisis may justify it as well, he says.