The purpose of this study was to understand the process of medication management of symptoms in patients with terminal cancer near death in the home from the perspective of family caregivers. The shift of healthcare delivery from the hospital to the home and the availability of palliative care/hospice expertise have increased the number of patients with terminal disease staying at home until death. The literature reveals that symptoms of distress such as pain, dyspnea, agitation, or nausea often occur in these patients, and control of symptoms with medications is required to provide comfort until death. Family caregivers become the medication managers who are challenged with this task in the home. Grounded theory methodology was used to identify the process of managing medications for symptoms in patients with cancer near death from the perspective of family caregivers. Data for the study consisted primarily of semistructured interviews with 17 female caregivers of patients with terminal cancer receiving home hospice care. Interviews were transcribed and analyzed using the constant comparative method of simultaneous data collection and analysis. The theory of Family Caregivers' Medication Management of Symptoms in Patients with Cancer near Death emerged with six stages: committing to be caregiver; taking on role of medication manager; achieving balance; recognizing changes near death; allowing adjustment of the balance; and evaluating self-efficacy and use of medications after the death. The core variable in the process was identified as “committing to the person to the end.” Nurses in practice should recognize that caregivers rely on the clinical judgment of home hospice nurses to develop medication schedules to facilitate control of symptoms and to arrange for emergency medications in the home. Healthcare policy needs to ensure access to hospice services for all Americans. Future research on caregiver self-efficacy in the period of bereavement and beyond is recommended.
Mary Kazanowski, PhD, ARNP, CHPN, is a Hospice/Palliative Care Nurse, VNA Hospice and a Professor in the Department of Nursing at Saint Anselm College, Manchester, NH.
Address correspondence to Mary Kazanowski, PhD, ARNP, CHPN, 11 Weymouth Dr, Bedford, NH 03110 (e-mail: firstname.lastname@example.org).
This article is based on the author's doctoral dissertation and was presented at the 4th Joint Clinical Conference of the National Hospice and Palliative Care Organization in Denver, CO, April 10, 2003.