Family and health-care professionals managing medicines for patients with serious and terminal illness at home: a qualitative study

Abstract

Background More effective ways of managing symptoms of chronic and terminal illness enable patients to be cared for, and to die, at home. This requires patients and family caregivers to manage complex medicines regimens, including powerful painkillers that can have serious side effects. Little is known about how patients and family caregivers manage the physical and emotional work of managing medicines in the home or the support that they receive from health-care professionals and services. Objective To investigate how patients with serious and terminal illness, their family caregivers and the health-care professionals manage complex medication regimens and routines of care in the domestic setting. Design A qualitative study involving (1) semistructured interviews and group discussions with 40 health-care professionals and 21 bereaved family caregivers, (2) 20 patient case studies with up to 4 months’ follow-up and (3) two end-of-project stakeholder workshops. Setting This took place in Nottinghamshire and Leicestershire, UK. Results As patients’ health deteriorated, family caregivers assumed the role of a care co-ordinator, undertaking the everyday work of organising and collecting prescriptions and storing and administering medicines around other care tasks and daily routines. Participants described the difficulties of navigating a complex and fragmented system and the need to remain vigilant about medicines prescribed, especially when changes were made by different professionals. Access to support, resilience and coping capacity are mediated through the resources available to patients, through the relationships that they have with people in their personal and professional networks, and, beyond that, through the wider connections – or disconnections – that these links have with others. Health-care professionals often lacked understanding of the practical and emotional challenges involved. All participants experienced difficulties in communication and organisation within a health-care system that they felt was complicated and poorly co-ordinated. Having a key health professional to support and guide patients and family caregivers through the system was important to a good experience of care. Limitations The study achieved diversity in the recruitment of patients, with different characteristics relating to the type of illness and socioeconomic circumstances. However, recruitment of participants from ethnically diverse and disadvantaged or hard-to-reach populations was particularly challenging, and we were unable to include as many participants from these groups as had been originally planned. Conclusions The study identified two key and inter-related areas in which patient and family caregiver experience of managing medicines at home in end-of-life care could be improved: (1) reducing work and responsibility for medicines management and (2) improving co-ordination and communication in health care. It is important to be mindful of the need for transparency and open discussion about the extent to which patients and family caregivers can and should be co-opted as proto-professionals in the technically and emotionally demanding tasks of managing medicines at the end of life. Future work Priorities for future research include investigating how allocated key professionals could integrate and co-ordinate care and optimise medicines management; the role of domiciliary home care workers in supporting medicines management in end-of-life care; patient and family perspectives and understanding of anticipatory prescribing and their preferences for involvement in decision-making; the experience of medicines management in terminal illness among minority, disadvantaged and hard-to-reach patient groups; and barriers to and facilitators of increased involvement of community pharmacists in palliative and end-of-life care. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 14. See the NIHR Journals Library website for further project information.

A mixed methods exploratory study of family experiences of anticipatory injectable medicines at home: It's a really good idea but it's just implementing it.

“…The considerable effort and burden of responsibility for medications, especially controlled drugs, has been described by Pollock et al in the recent in-depth study of FCs managing medicines at home [12]. Our work expands on this in exploring how injectable medications and patients’ needs in the last days of life can increase this feeling of responsibility.…”

Managing medicines at the end of life: a position paper for health policy and practice

“…There remains an underestimation of the support needed for patients and family caregivers to effectively self-manage care and COVID-19 has added to this burden. The managing medicines study ( Pollock et al , 2021 ) reinforced earlier findings that it is often the day-to-day practical problems associated with medicine use that lead to unintentional non-adherence. Concerns and anxiety can also arise around poor symptom control and administering potent medicines (e.g.…”

“…This may include dedicated support for patients and families in managing complex medicines regimes and help in navigating a complex and sometimes bureaucratic system of care. A striking finding from the managing medicines study was the notable lack of patient, family caregiver and professional awareness and use of the community pharmacist's knowledge, skill sets and ability to provide advice and support for medicine-related issues or problems ( Pollock et al , 2021 ). Even established NHS funded medication review services that aim to improve patients' knowledge of medicines and use ( Latif et al.…”

‘You need to be healthy to be sick’: exploring older people’s experiences with medication packaging at home

“…To use dosettes effectively, patients must have reasonable cognitive and organisational skills, memory recall, problem-solving abilities and dexterity. In a British report [ 22 ], the terminally ill patient required his medication to be decanted from the dosette by his wife due to difficulty handling the tablets with the dosette. In addition, dosettes replace the original medication packaging, meaning it can be difficult to obtain further information about the medication.…”

“…Although these methods provide relevant data about which packaging designs tend to fail in terms of accessibility to medication, they do not investigate the complexity experienced by people when handling a multitude of packaging and dosage methods in their own homes. One study has been identified describing the use of medications in the home setting, providing a case study of medication packaging format and user experiences for terminally ill patients [ 22 ]. Yet, little is known about the daily habits older people follow to take their medication and the implications of using multiple medication packaging to manage chronic diseases to a person’s life and general well-being.…”