Administration of end-of-life drugs by family caregivers during covid-19: a pandemic´s opportunity for future home prescribing plans
I read the Editorial by Bowers et al. with great interest and would like to thank the authors for the pertinent topic as it created a “ripple effect” on me about this issue: family caregivers’ administration of anticipatory medications. Several aspects captured my attention as I am a home-based palliative care (PC) physician in Portugal and a researcher.
First, the sparse existing research on the administration of end-of-life drugs by family caregivers at home, and therefore, the vital need for the development of evidence-based practice to provide support and do no harm. Additionally, the discussion around such a theme is warranted between clinicians, researchers and academics.
Second, the awareness that there might exist cultural differences and healthcare system organization disparities in the prescription of essential drugs to administer by family caregivers in the home setting. In our home-based PC team (and other Portuguese teams), the prescription of anticipatory medications (P.R.N.) (such as morphine, midazolam, levomepromazine, e.g.) in different drug formulations is standard practice. Especially when death approaches, training families is intensified to add the subcutaneous route as a preferable, safe, and efficacious route. I could not agree more with the authors stating that caregivers willing to take this role should be adequately, and actively, I must add, trained.
Based on my experience, I would like to add that part of families’ capability of engaging in such a delicate role comes from the team´s investment in two main areas: the technical and the communicational and emotional. The technical: the team´s availability to explain and clarify procedures; drug mechanisms; regular time intervals between administrations; general and local possible side effects; and leaving families with a P.R.N registration sheet to register each anticipatory medication given. The communicational and emotional: acknowledging the courage and possible burden of accepting this task and opening the opportunity for refusal (“You are not giving up on your loved one”); clarifying any emerging doubts and fears, including the frightening hastening death issue; remembering phone availability; and reinforcing the courage to perform such an invasive procedure.
I feel that the pandemic has not created a new challenge for our PC team in attributing caregivers the role of administering drugs to their loved ones, as we already considered them as potential “drug administers” in our clinical practice, before. However, we did never study or elaborate on any formal home prescribing plans to support caregivers on this role. Nevertheless, the pandemic led us to the need to predict unexpected pharmacy´s stock washouts and delays and to train families more frequently, in cases of severe respiratory distress or agitation during covid-19 infection.
Future research should aim to create PC home prescribing plans for the administration of drugs by their family caregivers caring for the terminally-ill, sharing common universal aspects and country-specific ones. These developments must be evidence-based, integrating consensus emerging from patients, caregivers and PC health professionals’ opinions, using both quantitative and qualitative methodologies. This Editorial is a significant milestone in maintaining this critical “ripple effect” in the PC community.
Miguel Julião MD, MSc, PhD
Competing interests: No competing interests