Administration of end-of-life drugs by family caregivers during covid-19 pandemicBMJ 2020; 369 doi: https://doi.org/10.1136/bmj.m1615 (Published 24 April 2020) Cite this as: BMJ 2020;369:m1615
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Pharmacists and End of Life Medication Use. Comment on Administration of end-of-life drugs by family caregivers during covid-19 pandemic
The use of medicine is common in healthcare and extensive research internationally has identified medication usage as the leading cause of unintended harm for patients. The medication-use process is complex, with a total of 54 identified phases (and numerous actors including pharmacists), for which many activities, tools, equipment, and information systems are needed and for which several interfaces are typically required. Many of these phases, particularly the medication administration process, carry high risks for patient and person administering medication (who may be a family member at end of life stage).
It is important that patients and their carers and prescribers are provided with a comprehensive service from their pharmacist who facilitates the safe and timely supply of medicines, as well as information and care to ensure the best possible outcome for each person. A structured set of policies and procedures should be in place to govern effective medicines management for end of life. Pharmacists are an essential component of any medication use process.
Pharmacists should be aware who will be administering medication at end of life stages. Pharmacists should be aware if the person administering medicines is a family carer, a family carer who has some specific training, a volunteer, a registered qualified nurse, a non regulated health care worker with some basic training, a non regulated healthcare worker with no medication administration training. Risks will vary depending on personnel involved and location.
The unregulated nature of healthcare assistants (HCA) has been highlighted in studies and reports and this is an issue for patient safety, professional conduct, educational standards and defining a scope of practice. HCAs should only administer medicines they have been trained, and are competent, to give. In care homes in the UK without nursing (that is, residential care homes), these will generally include:
• Tablets, capsules or oral mixtures
• Medicated creams or ointments
• Ear, nose or eye drops
• Inhaled medication (RPSGB, 2007).
Administering medicines using invasive or specialised techniques will normally involve a registered nurse who has received up-to-date training.
Threats to medication safety include miscommunication among health care providers (e.g. prescribers, pharmacists, nurses, family members) drug information that is not accessible or up to date, confusing directions from doctors and pharmacists, confusing labelling of dispensed medications, poor or unsafe administration technique, inadequate patient information, lack of drug knowledge (doctor, pharmacist, nurse, care staff, family member), incomplete patient medication history, lack of redundant safety checks, lack of evidence-based protocols, and staff and family members assuming roles for which they are not prepared.
Adverse events are common in health care with the incidence of medication administration errors high. Medication errors are among the most frequent adverse events. These adverse events may result in morbidity, mortality, increases in monitoring and costs of care.
Competing interests: No competing interests
Dear Editor, I read this article (in your paper version 16.5.2020) with interest. The authors raise important and very topical issues regarding end-of-life care. And in particular about the storage and availability of JICD (just in case drugs) in the community.
There was indeed a call for the exact requests they suggest: to hold readily available stocks of common end of life drugs in the community to be available in an emergency, and to keep a central stock in care homes where safe to do so (this would be the same as hospitals - rather than insisting 'named patient' basis only as is the existing community legislation)
Please see this Twitter thread for a letter published in The Times on the 23.4.2020 which was co-signed by a group of professionals:
This was followed by a petition. There was already pressure from the RCGP and other professional bodies.
The Government did in fact make an amendment to the law published 28.4.2020 (link below)
This is not perfect, and in its present form is only for the Pandemic. Nevertheless, it is a useful change, and in a sensible direction of travel for the legislation around the supply and storage of controlled drugs in the community setting.
It will require sustained pressure and more political lobbying to effect further and more permanent changes.
Simon Hodes GP
Competing interests: No competing interests
This welcome editorial highlights two important issues in caring for the dying in their own home, or care home, long recognised by palliative care and primary care teams. Both issues need addressing to reduce delays in getting end of life drugs to suffering, dying people. Delays that occur while prescriptions are written and processed and drugs delivered. Especially after hours and at weekends. This is vital as any delay in getting this medication to the person potentially causes unnecessary suffering, e.g. pain, shortness of breath, agitation. Not good for the person and awful for their family who carry the memories of watching such suffering into bereavement .
The first is to have a valid, up to date treatment escalation plan for every person identified as likely to die within the next twelve months. Such plans, in which the person needs to be involved drawing up, wherever appropriate, identify those for whom hospital admission as well as interventions like IV fluids, CPR, ICU admission, ventilation would not be appropriate as deterioration occurs.
The second is the importance of anticipatory prescribing. The authors call for central stocks of common end of life drugs. It makes more sense for the regulations to be changed to allow all care homes to hold a generic (rather than patient-named) stock of so called "just-in-case" medications (morphine, midazolam, haloperidol or levomepromazine and an anti-secretory). This would both reduce delays in starting treatment as well as being considerably more cost effective than the current system.
What the editorial does not address is who should be leading on the implementation of such plans. These ideas are not new. We also need a system that ensures they are implemented.
Competing interests: I was a Board member of the charity Compassion in Dying
The BMJ editorial entitled Administration of end-of-life drugs by family caregivers during covid-19 pandemic (24/04/2020) highlights critical issues around the need for training, support and careful prescribing for family carers to administer palliative medication at home. This is particularly the case for families caring for infants, children or young people (ICYP) at end-of-life. Our recent systematic review and meta-analysis1 2 found several barriers to symptom management in ICYP at end-of-life in the community, which could be exacerbated by the Covid-19 pandemic.
Parents value regular home visits by healthcare professionals who know their child and who can assist in treatment administration. Frequent visits may be deemed an infection risk and community doctors and nurses may have to limit face to face contact with families during the pandemic. Additionally, parents value hospices’ emphasis on, and expertise around, symptom management.3 However, in most cases, hospice visits are likely to be limited to emergencies and acute symptom management at end-of-life only during Covid-19, leaving even more of the caregiving burden to families.
ICYP’s palliative care needs are varied, complex and different to those of adults.4 Parents fear that symptoms will not be adequately controlled at home.5 6 They worry about accidental overdose,7 which may lead to insufficient treatment doses.8
Parents often need assistance when administering or managing treatment at home since many report a lack of information, knowledge and support.9 10 Although currently very few children are seriously affected by Covid-19, if a child’s condition worsen, families may delay help-seeking while social distancing measures are in place. Symptoms are harder to manage when an ICYP’s condition deteriorates.11 As such, access to 24-hour telephone support is critical for families. Clear symptom management plans, which include information on non-pharmacological strategies will also aid caregivers.12
Caregiver’ strain and negative mood are associated with parents’ ability to manage their child’s pain.13 Online or telephone mental health support for families should be provided, particularly when practical and social support is severely limited during the Covid-19 outbreak.
Healthcare professionals report having inadequate training, education or support to manage symptoms in ICYP at end-of-life. 14-16 Fears of addiction, sedation, respiratory depression or hastening death are common.17 Online education and access to specialist support, for example telephone support from a paediatric palliative care team, aid paediatric symptom management14 18 and should be made more freely available.
Prior to Covid-19, carers reported difficulties obtaining prescriptions and medications and having to coordinate care from different agencies.19 Parents felt that treatment for symptoms such as constipation were dismissed by HCPs as unimportant.20 A lack of communication between hospital and community staff was also linked to worse symptom management. It is critical during this time that there is well-planned interdisciplinary decision-making to minimise delays in accessing treatment.21
There is a lack of symptom management drugs licensed for children, leading to prescribing issues and restrictions. Palliative drugs often have a short-shelf life, are not produced in sufficiently small quantities for ICYP and can be challenging to access if they are controlled drugs. Anticipatory prescribing and timely access to drugs are critical to effectively managing symptoms in ICYP.
1. Greenfield K, Holley S, Schoth DE, et al. A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of life. Palliative Medicine 2020:0269216320907065.
2. Greenfield K, Holley S, Schoth DE, et al. Barriers and facilitators experienced by patients, carers and healthcare professionals when managing symptoms in infants, children and young people at end-of-life: a mixed methods systematic review protocol. BMJ open 2019;9(7):e030566.
3. Stein A, Forrest GC, Woolley H, et al. Life threatening illness and hospice care. Archives of Disease in Childhood 1989;64(5):697-702.
4. Himelstein BP, Hilden JM, Boldt AM, et al. Pediatric palliative care. New England Journal of Medicine 2004;350(17):1752-62.
5. Kohler JA, Radford M. Terminal care for children dying of cancer: quantity and quality of life. Br Med J (Clin Res Ed) 1985;291(6488):115-6.
6. Zelcer S, Cataudella D, Cairney AE, et al. Palliative care of children with brain tumors: a parental perspective. Archives of Pediatrics & Adolescent Medicine 2010;164(3):225-30.
7. Vickers JL, Carlisle C. Choices and control: parental experiences in pediatric terminal home care. Journal of Pediatric Oncology Nursing 2000;17(1):12-21.
8. Chi N-C, Demiris G, Pike KC, et al. Pain Management Concerns From the Hospice Family Caregivers’ Perspective. Am J Hosp Palliat Care 2018;35(4):601-11. doi: 10.1177/1049909117729477
9. Monterosso L, Kristjanson LJ, Phillips MB. The supportive and palliative care needs of Australian families of children who die from cancer. Palliative Medicine 2009;23(6):526-36. doi: 10.1177/0269216309104060
10. Monterosso L, Kristjanson LJ, Aoun S, et al. Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: evidence to guide the development of a palliative care service. Palliative Medicine 2007;21(8):689-96. doi: 10.1177/0269216307083032
11. Price JE. Parents' experiences of palliative and terminal care for children (patch) [Ph.D.]. Queen's University Belfast (United Kingdom), 2010.
12. Maynard L, Lynn D. Innovative approach to providing 24/7 palliative care for children. Nursing Children & Young People 2014;26(6):27-34. doi: 10.7748/ncyp.26.6.27.e445
13. Byrne MW, Evan E, Goshin LS, et al. Parent self-efficacy for managing pain in seriously ill children and adolescents nearing end of life. Palliative & Supportive Care 2011;9(2):137-47.
14. Bogetz JF, Root MC, Purser L, et al. Comparing Health Care Provider-Perceived Barriers to Pediatric Palliative Care Fifteen Years Ago and Today. Journal of Palliative Medicine 2019 doi: 10.1089/jpm.2018.0367
15. Peng NH, Chen CH, Huang LC, et al. The educational needs of neonatal nurses regarding neonatal palliative care. Nurse Education Today 2013;33(12):1506-10. doi: 10.1016/j.nedt.2013.04.020
16. Rapoport A, Obwanga C, Sirianni G, et al. Not Just Little Adults: Palliative Care Physician Attitudes Toward Pediatric Patients. Journal of Palliative Medicine 2013;16(6):675-79. doi: 10.1089/jpm.2012.0393
17. Zaal-Schuller IH, Willems DL, Ewals F, et al. Considering quality of life in end-of-life decisions for severely disabled children. Research in Developmental Disabilities 2018;73:67-75.
18. Fortney CA, Steward DK. A qualitative study of nurse observations of symptoms in infants at end-of-life in the neonatal intensive care unit. Intensive & Critical Care Nursing 2017;40:57-63. doi: 10.1016/j.iccn.2016.10.004
19. Pritchard M. Symptoms of dying children in the last week of life. University of Tennessee Health Science Center, 2006.
20. Malcolm C, Forbat L, Anderson G, et al. Challenging symptom profiles of life-limiting conditions in children: a survey of care professionals and families. Palliative Medicine 2011;25(4):357-64. doi: 10.1177/0269216310391346
21. Wolfe J, Grier HE, Klar N, et al. Symptoms and suffering at the end of life in children with cancer. New England Journal of Medicine 2000;342(5):326-33. doi: 10.1056/nejm200002033420506
Competing interests: No competing interests
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
We welcome Bowers et al’s editorial about families giving patients medications to control symptoms. Specialist Palliative Care teams in the UK have worked with their local health partners to try and devise systems to support dying patients in this way if needed because of concerns about availability of staff able to give injections to patients.
They talk about the limited evidence for use of medication given by other routes at the end of life. We completed a mixed methods feasibility randomised controlled trial soon to be published (Perkins P et al. BMJ Supportive & Palliative Care bmjspcare-2019-002029) using nasal fentanyl and buccal midazolam in this way in a hospice population. It will be interesting to see whether community randomised controlled trials of families giving medications are going to be possible or a change in practice in the pandemic means that this becomes commonplace without adequately powered trials.
We have supported many families to administer medications to control symptoms in the community. In our experience family members feel empowered and pleased that they could help. It is important to choose the right patient / family – someone who can cope with the demands involved and competent to take on this responsibility; and that they have 24/7 access to healthcare professionals who are confident to be able to advise and reassure them.
Competing interests: No competing interests