An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study

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

Archaeology and contemporary death: Using the past to provoke, challenge and engage

While death is universal, reactions to death and ways of dealing with the dead body are hugely diverse, and archaeological research reveals numerous ways of dealing with the dead through time and across the world. In this paper, findings are presented which not only demonstrate the power of archaeology to promote and aid discussion around this difficult and challenging topic, but also how our approach resulted in personal growth and professional development impacts for participants. In this interdisciplinary pilot study, archaeological case studies were used in 31 structured workshops with 187 participants from health and social care backgrounds in the UK, to explore their reactions to a diverse range of materials which documented wide and varied approaches to death and the dead. Our study supports the hypothesis that the past is a powerful instigator of conversation around challenging aspects of death, and after death care and practices: 93% of participants agreed with this. That exposure to archaeological case studies and artefacts stimulates multifaceted discourse, some of it difficult, is a theme that also emerges in our data from pre, post and follow-up questionnaires, and semi-structured interviews. The material prompted participants to reflect on their biases, expectations and norms around both treatment of the dead, and of bereavement, impacting on their values, attitudes and beliefs. Moreover, 87% of participants believed the workshop would have a personal effect through thinking differently about death and bereavement, and 57% thought it would impact on how they approached death and bereavement in their professional practice. This has huge implications today, where talk of death remains troublesome, and for some, has a near-taboo status–‘taboo’ being a theme evident in some participants’ own words. The findings have an important role to play in facilitating and normalising discussions around dying and bereavement and in equipping professionals in their work with people with advanced illness

From plastered skulls to palliative care: what the past can teach us about dealing with death.

Modern, advanced healthcare detects and monitors long-term and life-limiting illness more comprehensively than ever before. However, death is now often considered medical failure, and is a virtually taboo topic of conversation in daily life. At a time when the societal relevance of archaeology is under scrutiny more than ever before, the AHRC-funded Continuing Bonds Project – a collaboration between archaeology and palliative care – explores the potential of the past to promote discussion. Not only does archaeology illuminate the diversity of practice surrounding death, the past provides a safe, distanced platform for considering death, dying and bereavement today. Through archaeological and ethnographic case studies, health and social care professionals and students consider topics such as place, choice and identity, in both personal and professional life. This article examines participant responses to a variety of archaeological material and presents post-workshop reflections which demonstrate the success of archaeology in opening up conversations and increasing confidence in discussing this most enduring and problematic of life events

Issues for palliative medicine doctors surrounding the withdrawal of non-invasive ventilation at the request of a patient with motor neurone disease: a scoping study

Background Non-invasive ventilation (NIV) is beneficial for respiratory failure in motor neurone disease (MND) but some patients may wish to stop the intervention. Guidance from the National Institute for Health and Care Excellence recommends that research is needed on NIV withdrawal. There is little in the literature focusing on the issues doctors face when withdrawing NIV in this group. Aim To identify issues and challenges that palliative medicine doctors encounter in relation to the withdrawal of NIV in MND patients. Method An electronic questionnaire was sent to members of the Association of Palliative Medicine of Great Britain and Ireland. Participants rated how practically, emotionally and ethically challenging they found the process of NIV withdrawal. Results 76 doctors responding had been directly involved in withdrawal of NIV at the request of a patient with MND. A high percentage rated the practical, ethical and emotional challenges as 7 or more on a 0–10 scale. Thematic analysis of the free text revealed some common difficulties. Lack of guidance on practical aspects of withdrawal, poor advance care planning and the need to support all involved to prevent conflict were recurrent themes. Statements relating to the emotional burden were diverse but suggest many palliative care doctors feel significant personal impact. Conclusions The withdrawal of NIV in patients with MND appears to pose considerable challenges to palliative medicine doctors; emotionally, practically and to a lesser extent ethically. Development of guidelines and a clear ethical statement of conduct may help but emotional issues appear more complex

Mediating worlds : the role of nurses as ritual specialists in caring for the dead and dying

Rituals are central to the everyday life of the nurse, yet the fundamental roles that rituals play in caring for the dead and dying has often been neglected. This paper explores modern palliative and post-mortem care – its practices, practitioners and arenas – against the background of long-held, global concerns regarding the dead and dying. Comparison with the archaeological and ethnographic records demonstrates©the ubiquitous and enduring practices surrounding death, and the centrality of ritual specialists to this complex social and biological process. This deep-time perspective highlights the importance of nurses, and their associated nursing rituals, in the transition of patients between life and death, and the difficult journeys that nurse, patient and family undertake in this mediation between worlds. Such a perspective not only empowers nurses in their daily practices, and places nursing rituals firmly at the centre of modern palliative care work, but demonstrates the value of archaeology and ethnography in contextualising the challenges of today

End of life decision making when home mechanical ventilation is used to sustain breathing in Motor Neurone Disease: patient and family perspectives

BackgroundMotor Neurone Disease (MND) leads to muscle weakening, affecting movement, speech, and breathing. Home mechanical ventilation, particularly non-invasive ventilation (NIV), is used to alleviate symptoms and support breathing in people living with MND. While home mechanical ventilation can alleviate symptoms and improve survival, it does not slow the progression of MND. This study addresses gaps in understanding end-of-life decision-making in those dependent on home mechanical ventilation, considering the perspectives of patients, family members, and bereaved families.MethodsA UK-wide qualitative study using flexible interviews to explore the experiences of people living with MND (n = 16), their family members (n = 10), and bereaved family members (n = 36) about the use of home mechanical ventilation at the end of life.ResultsSome participants expressed a reluctance to discuss end-of-life decisions, often framed as a desire to “live for the day” due to the considerable uncertainty faced by those with MND. Participants who avoided end-of-life discussions often engaged in ‘selective decision-making’ related to personal planning, involving practical and emotional preparations. Many faced challenges in hypothesising about future decisions given the unpredictability of the disease, opting to make ‘timely decisions’ as and when needed. For those who became dependent on ventilation and did not want to discuss end of life, decisions were often ‘defaulted’ to others, especially once capacity was lost. ‘Proactive decisions’, including advance care planning and withdrawal of treatment, were found to empower some patients, providing a sense of control over the timing of their death. A significant proportion lacked a clear understanding of the dying process and available options.ConclusionsThe study highlights the complexity and evolution of decision-making, often influenced by the dynamic and uncertain nature of MND. The study emphasises the need for a nuanced understanding of decision-making in the context of MND

Understanding living with tracheostomy ventilation for motor neuron disease and the implications for quality of life: a qualitative study protocol

Introduction: Home mechanical ventilation can be used to manage symptoms of breathlessness and sustain life for people living with motor neuron disease (plwMND). In the UK, less than 1% of plwMND use tracheostomy ventilation (TV). This contrasts with some other countries, where rates are much higher. Due to a lack of evidence about its feasibility, cost-effectiveness or outcomes, TV is not covered in the UK National Institute for Health and Care Excellence guidance. Most plwMND receiving TV in the UK do so as an unplanned crisis intervention, which can lead to a prolonged hospital stay while a complex care package is arranged. There is insufficient literature addressing the burdens and benefits of TV, how it should be initiated and delivered, and how future care choices for plwMND can be supported. The aim of this research is to provide new understandings of the experiences of plwMND using TV, and those of family members and healthcare professionals (HCPs) involved in their care.Methods and analysis: A UK-wide qualitative study with two workstreams: (1) Patient focused case studies (n=6) including plwMND, family members and HCPs to focus on experiences and tasks of daily living from multiple perspectives. (2) Interviews with plwMND (n=10), family members, including bereaved family members (n=10) and HCPs (n=20) on broader experiences and issues relating to use of TV, such as ethical considerations and decision making.Ethics and dissemination: Ethical approval has been granted by the Leicester South Research Ethics Committee (22/EM/0256). All participants will be asked to provide electronic, written and/or audio recorded informed consent. Study findings will be disseminated in peer-reviewed journals and conference presentations and used to develop new resources for teaching and public information