Title: Managing medicines for patients with serious illness being cared for at home
Funder: Department of Health and Social Care

Abstract: The study will explore how patients with serious and terminal illness, their family care givers (FCGs) and the health care professionals (HCPs) who support them, engage collaboratively in managing medicines prescribed for relief of symptoms towards the end of life. It will include a particular focus on patients with conditions other than cancer and from under-served and minority ethnic groups. Effective control of symptoms causing distress and pain is critical to improving the quality of end of life care (EOLC) and supporting patients to die at home(1). FCGs play a critical role in helping patients to manage complex medication regimes, and the difficulties they confront in doing this have not been adequately acknowledged or addressed (2-5). Poor control of symptoms is a likely cause of crises leading to distressing and costly hospital admissions(6,7). Evidence suggests that difficulties persist in all aspects of EOLC medicines management in community settings, from supply and access to drugs, to professional coordination and administration of prescribed regimes, and lack of support for families assuming responsibility for patient care(2,4,5,8-11). Setting: East Midlands, UK. HCPs, FCGs and patients will be recruited through general practices, hospices and specialist community palliative care services throughout Nottinghamshire and Leicestershire. Design. A two and a half year qualitative study with three work packages. 1.Stakeholder interviews (40) with 20 bereaved FCGs and 20 HCPs with experience of managing medicines for patients being care for and dying at home. HCP interviews will explore participants’ experience of: 1. Prescribing, accessing and managing medicines, including AMs where prescribed,and 2. How participants involve and support patients and FCGs in managing medicines in the home, and understanding the aim and purpose of AMs where prescribed and used. Bereaved FCG interviews will explore participants’ experiences of these processes in relation to the care of their deceased relative, including their involvement and responsibility for managing medicines throughout the later stages of the illness, the communication and support received from professionals, and how well they felt the system coordinated care. The qualitative software programme NVivo 11 will be used to facilitate a thematic analysis of this data set based on the principle of constant comparison(12). 2.Longtitudinal patient-centred case studies with 20 patients and up to 3 month follow up. HCPs will be asked to identify eligible patients using the SPICT tool and the EPaCCs and GSF palliative care registers. The aim will be to recruit roughly equal subgroups of patients: 1. Referred for specialist palliative care nursing and 2. Managed within generalist community services and to ensure participant diversity. Case study analysis will triangulate different data sources including baseline and follow up interviews with patients, FCGs and HCPs, observation, review of case notes, and analysis of medicines prescribed and used (13). A social network analysis will be undertaken of how the work of medicines management is distributed within the patient's home and through professional communication and interrelations within the wider network of services involved in each case (14). 3. Stakeholder workshops in Nottingham and Leicester will initiate dissemination of findings, identify priorities for practice and promote the development of research and training collaborations between stakeholders and members of the research team.

Lay abstract: Excellent control of pain and distress for seriously ill and dying patients is one of the most important tasks of health care. This study will explore how patients being cared for at home, their family care givers and the health care professionals who support them, engage collaboratively in managing medicines prescribed for the relief of pain and difficult symptoms for illnesses other than cancer, with particular reference to those from under-served and minority ethnic groups. It will investigate how patients and their family care givers manage complex medication regimes, often involving powerful drugs with potentially harmful side effects and interactions, prescribed for pain and other symptoms. Pain, in particular, is less well controlled at home. Health care professionals are reported to lack confidence in prescribing and administering end of life care medicines, and there can be problems in accessing medicines quickly outside normal working hours. Anticipatory medicines are prescribed on a ‘just in case’ basis to ensure immediate availability if needed to control symptoms which commonly occur before death. Little is known about the processes which trigger their actual use, or how the patient and family care givers may be involved in such decisions. Inappropriate prescribing or use of medicines compromises patients' quality of life and can result in medical crises and hospital admissions which increase costs and pressure on NHS resources. We want to understand how health care professionals can better support patients and their families to manage medicines at the end of life and how different services and systems can work effectively together to enable them to do this. We also want to know how community pharmacists could play a greater role in managing medicines for patients being cared for and dying at home. The study will provide evidence to inform service development and training for health professionals which will help to improve the experience and care of patients being looked after and dying at home. The study has three parts: 1. We will interview 20 bereaved carers and 20 community health care professionals about their views and experience of managing medicines for seriously ill and dying patients, problems encountered and how these could be overcome and care improved. 2. We will carry out detailed longitudinal qualitative case studies of 20 patients, their family care givers and the professionals providing care, to understand the issues from different perspectives. The case studies will include baseline and follow up interviews with each participant over a period of up to 3 months. Patients will participate only for as long as, and at a level at which, they are willing and able. Direct observation of how patients, family care givers and health care professionals discuss medicines and medicine taking will enable an understanding of how communication and decision making about end of life care medicines occurs in real world settings. With permission, we will review patients’ medical records to establish what medicines were prescribed and used. 3. We will organise workshops in Nottingham and Leicester, bringing together patients, family caregivers, health professionals, managers, commissioners and educators to review the findings and suggest how improvements in the management of medicines for patients dying at home may be applied in practice and included in future training and educational resources for professionals and carers

Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE