Managing Medications During Home Hospice Cancer Care: The Needs of Family Caregivers

Abstract

Context Family caregivers (FCGs) are often at the frontline of symptom management for patients with advanced illness in home hospice. FCGs’ cognitive, social and technical skills in complex medication management have been well studied in the literature; however, few studies have tested existing frameworks in clinical cases in home hospice. Objectives This study sought to assess the applicability of Lau et al.’s caregiver medication management skills framework in the context of family caregiving in home hospice in order to further the understanding of FCGs’ essential medication management skills. Methods This was a secondary data analysis of 18 audio recorded home hospice visits transcribed verbatim; deductive content analysis of caregiver-nurse interactions was conducted. The target sample included FCGs of hospice patients who had cancer diagnoses in hospices located in the greater urban area of the Rocky Mountain West. Caregiver medication management skills were identified and categorized into the five domains of caregiver expertise. Exemplars of each domain were identified. Results An average of four medications (SD 3.5) was discussed at each home hospice visit. Medication knowledge skills were observed in the majority of home hospice visits (15 of 18). Teamwork skills were observed in 11 of 18 cases, followed by organizational and personhood skills (10 of 18). Symptom management skills occurred in 12 of 18 cases. An additional two subconstructs of the Personhood domain –1) advocacy for the caregiver and 2) skills in discontinuing medications – were proposed. Conclusion These findings support Lau et al.’s framework for caregiver medication management skills and expands upon the existing domains proposed. Future interventions to assess FCGs’ skills are recommended.

Frequency and Documentation of Medication Decisions on Discharge from the Hospital to Hospice Care

“…Although discharge summaries may underreport patient and family involvement, this observation suggests a missed opportunity to clarify the intentions of medication decisions and address questions and concerns regarding medication management. This finding is significant because previous studies reported that caregivers frequently feel overwhelmed and unprepared to manage hospice medications . Furthermore, although the rationale may be clear in the case of discontinuing many medications, providing clear and concise information regarding decisions to continue or initiate medications could enhance communication with hospice facilities and improve medication decision making around transitioning to hospice …”

Managing Medicines for Patients Dying at Home: A Review of Family Caregivers' Experiences

“…Medication that could be given as either a liquid or a pill also caused confusion for FCGs. 38 FCGs in another 41 study cited the sheer volume of medications as problematic. These often had to be given at specific times, with or without food, and in different combinations.…”

“…Indeed Lau et al 37 suggested that to understand and respond to patient need, a theme they refer to as personhood, FCGs must develop both symptom and medication knowledge (also see Ref. 38 ). Lau et al 37 classified symptom knowledge as encompassing the ability to recognize and respond to common symptoms at the end of life.…”

Continuation of non-essential medications in actively dying hospitalised patients

“…Caregivers may receive guidance and support in reducing or curtailing medications for disease management from hospice staff 1. However, most patients die in institutional settings, hospitals or nursing homes, where they are receiving care for the progression of one or more chronic illnesses.…”