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• W4313476044 abstract "British Journal of Community NursingVol. 28, No. 1 ProfessionalFree AccessManaging medication at the end of life: supporting family carersBen Bowers, Eleanor WilsonBen BowersE-mail Address: [email protected]Post-Doctoral Research Fellow and Community Palliative Care Nurse, Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge; Community Nursing Research Consultant, Queen’s Nursing Institute, LondonSearch for more papers by this author, Eleanor WilsonSenior Research Fellow, Nottingham Centre for the Advancement of Research into Supportive, Palliative and End of Life Care, School of Health Sciences, University of NottinghamSearch for more papers by this authorBen Bowers; Eleanor WilsonPublished Online:2 Jan 2023https://doi.org/10.12968/bjcn.2023.28.1.34AboutSectionsPDF/EPUB ToolsAdd to favoritesDownload CitationsTrack CitationsPermissions ShareShare onFacebookTwitterLinked InEmail Effective medicines management is key in enabling timely end-of-life symptom control in the community (Payne et al, 2015; Latif et al, 2021). Managing medications in home is a complex, multi-faceted activity, one that is intertwined with the practical and emotional stresses experienced by patients and their families. Family (and friend) carers usually shoulder these responsibilities as patients become increasingly ill and dependent on their support. They typically oversee and manage the patient’s end-of-life medications and are also expected to undertake complex care and technical medication tasks with little or no training (Oliver et al, 2013; Wilson et al, 2018; Bowers et al, 2022). Community nurses can act as a ‘linchpin’ in supporting families with medication management at the end of life, informing, supporting and advocating on the family’s behalf (Huisman et al, 2020). However, persistently over-stretched resources mean that community nursing input for supporting medication management is often restricted to functional and reactive interventions (Bowers, 2021; Pollock et al, 2021). In the context of constrained health and social care support, community nurses need to consider how personalised, timely professional advice and support with medication management can be best achieved.The work of managing medicationHealthcare professionals often underestimate the complexities and difficulties experienced in managing medication in the home and the considerable, associated hidden work carried out by family members as they care for their dying relative. Studies undertaken in the UK by Pollock et al (2021) and Payne et al (2015) investigated families’ experiences of managing medicines at the end of life. They found that patients, and in particular their family carers, bore the brunt of medication management responsibilities and workload, including: ordering and collecting prescriptions; assessing the need for oral medication and administering doses; monitoring for side effects; and keeping track of medication use. Family carers reported having to assume the unwelcome task of surveillance: promoting and making sure patients took their medication, offering reassurance, remaining vigilant to frequent changes in prescriptions made by healthcare professionals and the possible side effects of medication. Family carers often reported they had been given little information about medications, their use and side effects. The challenges of managing end-of-life medicines can be further exacerbated by having to navigate complex supply and access issues (Bowers and Redsell, 2017; Campling et al, 2022; Latter et al, 2022). This physical and emotional labour takes place in the context of exhaustion, limited support, growing social isolation and the anticipated loss of a family member (Sheehy-Skeffington et al, 2014; Payne et al, 2015; Wilson et al, 2021; Bowers et al, 2022). In summary, the work of managing medications is complex and performed during a time of great stress. Many families need extensive professional support to navigate the complexities of meeting ever-changing needs and managing symptoms at home.Pollock et al’s (2021) research draws on May et al’s (2014) Burdens of Treatment Theory to help understand and consider the capacity of patients to benefit from care, within the context of their social networks and structural constraints. Burdens of medication treatment must be considered from the perspectives of the patient, their family and wider support networks to ensure that the work of care is appropriate and sustainable (May et al, 2014; Mair and May, 2014). As patients near death, they and their increasingly fragile informal support networks can become overwhelmed by the burdens of monitoring symptoms and the effectiveness of end-of-life medication, organising and collecting prescriptions and coordinating care with various healthcare services (Oliver et al, 2013; Bowers, 2021; Pollock et al, 2021). This collective work and the burden of ensuring that suitable care is given is ever-present, demanding and underacknowledged. Healthcare professionals and community healthcare services routinely expect and rely on family carers to have the capacity, will and skills to undertake increasingly complex, technical professional medication management activities, alongside their other caring roles (Seamark et al, 2014; Pollock et at, 2021). This longstanding trend has been exacerbated by the COVID-19 pandemic, with some community healthcare teams reducing home visits and moving to video and phone support (Bowers et al, 2020; Bowers et al, 2021; Antunes et al, 2022). We know that nurses can struggle with making decisions to use potent medications, including opioids at the end of life (Wilson et al, 2015; Bowers and Redsell, 2017; Bowers et al, 2020). It is vital that we consider the limits of what is reasonable to ask family carers to do, especially when they are tired, distressed or under pressure (Wilson et al, 2021).Information needsFamily carers’ confidence with managing end-of-life medications generally increases with time, knowledge and access to professional advice (Latter et al, 2018; Wilson et al, 2018). However, explorative studies have repeatedly found family carers’ abilities and experiences of managing medications are inhibited by a perceived lack of knowledge or access to information (Terry et al, 2006; Oliver et al, 2013; Payne et al, 2015; Wilson et al, 2021). Titrating medication doses, particularly opioids, to treat increased symptoms is a source of anxiety for family carers; making a medication error or causing over-sedation is a major concern (Terry et al, 2013; Oliver et al, 2013; Pollock et al, 2021).Family carers draw on a range of social reference points and beliefs to understand when medications will help, including any past experiences of seeing friends and relatives die and wider public opinions that opioids are addictive and can hasten death (Flemming, 2010; Oliver et al, 2013; Payne et al, 2015). This collective ‘stock of knowledge’ helps them make sense of changing and unfamiliar situations (Shutz, 1970; Bowers, 2021). Community nurses have a central role in exploring families’ stock of knowledge and concerns about medications. This includes explaining the purpose of individual medications, how and when to use them and regularly revisiting information and support as symptoms change and any side effects of medications are witnessed. Even when detailed information about medications are given, reinforced and checked by community nurses, family carers report periodic verbal information is not sufficient (Oliver et al, 2013; Payne et al, 2015; Wilson et al, 2021). Family carers need to be able to refer to written information when they are assessing the need for medication and feel under strain, such as in the middle of the night (Wilson et al, 2021).Latter et al (2018) co-developed and assessed the feasibility and acceptability of a community nurse-led conversational and toolkit intervention for managing pain medicine, including tailored written information for family carers. They found that the intervention was perceived as helpful by nurses and family carers, but nurses tended to distribute the written resources indiscriminately rather than seeing the intervention as an ongoing, conversational and educational process. Latter et al’s (2018) study highlighted the limitations of focusing on functional tasks and dispensing written information alone. Easy-to-understand written materials are a useful resource for families to refer to in times of stress and uncertainty about the best course of action to control symptoms (Bowers, 2021; Wilson et al, 2021). However, written information should not be used as a substitute for tailored and suitably detailed in-person conversations.Recommendations for practiceWe propose three key ways community nurses can actively help and support families navigate the complexities of managing end-of-life medications at home.First, make time during visits to explore patient and their family carers’ understanding of when to use individual medications and the systems they are adopting to ensure medications are being used when needed and replenished. Tailor support to make care sustainable and to answer questions as they arise (Latter et al, 2018; Wilson et al, 2021). This includes easy to read, written advice to back-up ongoing conversations.Second, allocate a named healthcare professional ‘keyworker’ to be responsible for overall care coordination and ensure a prescriber periodically reviews medication with the patient and their family, especially when their situation and the patient’s condition changes. These steps are essential in explaining the role of additional symptom control medicines and rationalising medication-deprescribing those that are no longer beneficial, or add unnecessary and unwanted burdens. Patients and family carers can have different perspectives to professionals regarding the value of continuing long-term preventative medicines. Explore understanding and preferences through open, honest conversations about death being near and the benefits verses burdens of continuing some medicines (Dees et al, 2018). Otherwise, well-intended prescribing and deprescribing, especially when done remotely with limited conversations, can add to worries, misunderstandings and the work of care.Third, ensure families have easy access to expert medication advice 24-hours a day. This is vital in helping families navigate medications management as the patient’s condition deteriorates and their symptom control needs fluctuate, especially at night. Families look to community nurses as the ‘linchpin’ of this professional support and this needs factoring into care plans. Community pharmacists are an under-utilised resource in end-of-life care and sign-posting families to their expert advice can supplement support from community nurse teams and general practitioners (Latif et al, 2021; Pollock et al, 2021).ConclusionFamily carers often provide the bulk of end-of-life symptom control care at home and are the continuity of care. The work of managing medications must feel realistic and sustainable from their and the patient’s perspectives. When family carers feel supported, well-informed and confident in using medications to help with comfort, it can alleviate feelings of powerlessness and give them a sense of control. 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