Caregivers Experiences of Managing Medications for Palliative Care Patients at the End of Life

Abstract

Informal caregivers are important in enabling palliative care patients to die at home, including their role in managing medications. Often these patients are taking multiple medications, imposing an unnecessary burden on those who are already struggling with oral intake. A literature review revealed that, while there are a number of qualitative studies published examining the experience of caregivers looking after patients at the end of life, there is a dearth of published studies specifically examining the impact of managing medications on caregivers. This study explores the experience of caregivers managing medications for patients dying at home, focusing on the impact of polypharmacy, the use of syringe drivers and the use of "as needed" medications for symptom control. Three focus groups were performed, involving bereaved caregivers of patients that had died at home, and were analysed using content thematic analysis. Themes that emerged include: the significant burden of polypharmacy; the positive impact of subcutaneous infusions; the value of being able to give medications as needed for symptom control; the importance of clear guidance to assist with medication management. Strategies are suggested that might ease the burden of medications at the end of life.

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

“…These issues led FCG participants to suggest that health professionals rationalize unnecessary medications and remove them from prescriptions at an earlier stage to prioritize the most important medications. 41 The complexity of these elements combined with FCG fatigue, low literacy, limited English proficiency, and physical infirmities, such as poor eyesight, arthritis, reduced mobility, and strength, 40 all contribute to making the administration of medications at the end of life extremely challenging for FCGs.…”

“…In a small number of articles, FCGs reported feeling empowered by being able to give timely and appropriate pain medication. 41,48 Confidence in their abilities to manage medicines in the home was reported to increase over time. 47 Indeed, those in the study by Kazanowski 44 reported finding the experience important and meaningful.…”

“…Some FCGs reported having different perceptions about what levels of pain or distress might be acceptable before administering medication. 39,41,47 This was also linked to concerns about overdosing patients and perceptions about opioid medications. 45,46 The included articles only touched on this important aspect of family dynamics.…”

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

“…However, what was largely missing from the recorded visits was evidence of nurses breaking down information into understandable components, using repetition, asking for understanding, or engaging in teach back. 28, 29 These strategies are likely to be effective for individuals in cognitive and emotional overload, a state which most family FCGs face. Lau et al discuss symptom and medication knowledge (e.g., “understanding time to peak effectiveness”), but our findings indicate that both hospice nurses and families need basic tools to help FCGs assimilate the information so they can gain competency.…”

Besoins des proches aidants qui accompagnent une personne en soins palliatifs et de fin de vie à domicile

“…La recension des écrits a permis de constater que pour se préparer à leur rôle, les PA ont besoin d'informations concernant la maladie de leur proche, particulièrement en ce qui concerne la gestion des symptômes, les soins à offrir (Funk et al, 2015) et la gestion et l'administration de la médication (Wilson et al, 2018). Pour ce faire, ils ont besoin d'être guidés et informés par les professionnels de la santé (notamment l'infirmière) afin de diminuer l'anxiété liée à l'exécution de ces tâches (Sheehy-Skeffington et al, 2014). Plusieurs PA ont fait l'expérience d'être présents 24 h/24 afin d'assumer les responsabilités de soins en plus d'effectuer les tâches de la vie quotidienne (Robinson et al, 2017).…”