Primary caregiver perceptions of intake cessation in patients who are terminally Ill

To explore the meaning of nutrition cessation in adult in-home hospice patients with cancer as described by women primary caregivers during the first year of bereavement.

In-home hospice in the northeastern region of the United States.

Twelve English-speaking adult women who had cared for patients who were terminally III with cancer who ceased oral intake.

Qualitative phenomenologic inquiry.

Verbatim written transcripts of semistructured interviews were studied line by line to identify themes. Shared themes emerged through ongoing comparison across cases.

Within the framework of transition, seven essential themes emerged: The Meaning of Food, Caregiver as Sustainer, Concurrent Losses, Personal Responses, Ceasing to Be--"Starved to Death," Being Bereaved--The Meaning Now, and Paradox. Patient changes in intake patterns and caregiver actions to encourage intake were described. Decreasing intake led to ongoing and spiraling losses. Caregiver intake patterns also changed.

Caregivers believed that patient-nutrition cessation was naturally occurring and not physically painful.

Sensitized nurses can look for the presence of the phenomenon in cancer caregiving families and open dialogue. Anticipatory guidance can serve to normalize the situation and ease the transition. Future research should focus on what nurses know and what they share with families regarding intake cessation. Research with caregivers could address values clarification, decision making, knowledge needed for caregiving, the perceptions of caregiving men, and caregivers of diverse cultures. More research conducted with patients ceasing intake is needed to determine whether and to what degree patients suffer.