BACKGROUND: The management of medicines towards the end of life can place increasing burdens and responsibilities on patients and families. This has received little attention yet it can be a source of great difficulty and distress patients and families. Dose administration aids can be useful for some patients but there is no evidence for their wide spread use or the implications for their use as patients become increasing unwell. The study aimed to explore how healthcare professionals describe the support they provide for patients to manage medications at home at end of life.
METHODS: Qualitative interview study with thematic analysis. Participants were a purposive sample of 40 community healthcare professionals (including GPs, pharmacists, and specialist palliative care and community nurses) from across two English counties.
RESULTS: Healthcare professionals reported a variety of ways in which they tried to support patients to take medications as prescribed. While the paper presents some solutions and strategies reported by professional respondents it was clear from both professional and patient/family caregiver accounts in the wider study that rather few professionals provided this kind of support. Standard solutions offered included: rationalising the number of medications; providing different formulations; explaining what medications were for and how best to take them. Dose administration aids were also regularly provided, and while useful for some, they posed a number of practical difficulties for palliative care. More challenging circumstances such as substance misuse and memory loss required more innovative strategies such as supporting ways to record medication taking; balancing restricted access to controlled drugs and appropriate pain management and supporting patient choice in medication use.
CONCLUSIONS: The burdens and responsibilities of managing medicines at home for patients approaching the end of life has not been widely recognised or understood. This paper considers some of the strategies reported by professionals in the study, and points to the great potential for a more widely proactive stance in supporting patients and family carers to understand and take their medicines effectively. By adopting tailored, and sometimes, 'outside the box' thinking professionals can identify immediate, simple solutions to the problems patients and families experience with managing medicines.
Doctors, nurses, and family caregivers worldwide are facing tough decisions concerning the supply and administration of medications to manage symptoms when patients are dying from covid-19 or other conditions in the community or care homes. Proposed changes in practice aimed at ensuring adequate end-of-life symptom control need careful consideration alongside appropriate training and support.
Updated UK advice, including NICE rapid guidance on managing covid-19 symptoms in the community, reiterates the importance of prescribing medications in advance of need for pain, nausea and vomiting, agitation, and respiratory secretions. These drugs may be administered if needed by visiting doctors or nurses, as is already well established in some countries. However, this practice is being overhauled radically in response to the pandemic.
In the current ecology of care, social, rather than medical, support is critical in enabling frail older people to live at home. This paper reports findings from a qualitative study about how home care workers (HCWs) support persons with dementia living in the community. Semi-structured qualitative interviews were carried out in England with 14 family care-givers (FCGs) recruited from a single private home care provider. A thematic analysis of the data was undertaken using the constant comparative method. In every instance, it was FCGs who initiated domiciliary care for the person with dementia, highlighting ambiguity about who is the ‘client’. Rather than focusing on the HCWs’ work in undertaking practical tasks and personal care, respondents prioritised HCWs as companions, providing emotional and social support for their relatives. From an organisational perspective, respondents valued the capacity of the provider to deliver a consistent, personal, reliable and punctual service. These attributes were important in supporting their relative's agency and dignity. Respondents described HCWs engaging in skilled and sensitive communication with clients but considered ‘character’ and ‘innate’ caring abilities to be more important than those derived from training. The results highlight the need to acknowledge the family, rather than the individual client, as the functioning unit of care, and to recognise the highly skilled communicative and emotional work undertaken by HCWs.
CONTEXT: Increased life expectancy, technical advances in treatment and symptom control, and the extension of palliative care in community settings not only lengthen life, but make it possible for many patients to be cared for, and to die, at home. Moreover, death increasingly occurs in late old age and after a prolonged period of co-morbidity and/or frailty. This has far reaching consequences for the way that professional services are resourced and organised, and for the informal carers who are often responsible for providing the greater part of patient care, including management of complex medication regimes.
OBJECTIVES: To explore the literature focused on family caregivers' experiences of medications management for patients being cared for and dying at home.
METHODS: This literature review takes a Critical Interpretive Synthesis approach to the review of 15 identified papers.
RESULTS: Findings show that family caregivers can struggle to manage medications for someone who is dying at home, yet there is an expectation that they will take on these roles and they are often judged by professional standards. Five key themes identified particular issues around administration, organisational skills, empowerment, relationships and support.
CONCLUSION: As increasing demands are placed on family caregivers, there remains limited acknowledgement or understanding of the challenges they face, how they cope, or could be best supported. Alongside training, family caregivers need access to 24hrs support and medication reviews to rationalise unnecessary medications. Furthermore, the ethical challenges arising from administering medicines at the end of life also need to be acknowledged and discussed.
This is the second in an occasional series of paired commentaries in Age and Ageing, the Journal of the British Geriatrics Society and the Journal of the American Geriatrics Society (JAGS). The aim is to address issues of current significance and to foster dialogue and increased understanding between academics and clinicians working in comparative international settings. Both commentaries address the urgent need to improve palliative care for older people, with a critique of some stereotypes surrounding palliative care and the 'good death'. The companion commentary, published in JAGS, was written by Alexander Smith and Vyjeyanthi Periyakoil, and is grounded in their experience as academic clinicians (Smith AK, Periyakoil V. Should we bury 'The Good Death'? Journal of the American Geriatrics Society 2018; in press). In the present paper, we offer a perspective on the outcome and wider consequences of misalignment between current UK policy and aspirations for end of life care in relation to epidemiological trends and patient experience of death and dying.