Self-management support at the end of life: Patients’, carers’ and professionals’ perspectives on managing medicines

Abstract

Background: Pain is a frequently reported symptom by patients approaching the end of life and wellestablished that patients and carers hold fears relating to opioids, and experience side effects related to their use. The management of medicines is intrinsic to achieving effective pain relief. The concept of self-management support whilst well characterised in the context of chronic illness has not been elaborated with respect to end of life care. Aim: To identify patient, carer and professional views on the concept of self-management support at end of life, specifically in relation to analgesia and related medicines (for side-effect management) in order to describe, characterise and explain self-management support in this context. Methodology & Methods:Qualitative design, data collection methods involved focus groups and interviews. Topics included the meaning of self-management support in this context, roles and behaviours adopted to manage pain-related medicines, and factors that influence these. A largely deductive approach was used, involving verification and validation of key frameworks from the literature, but with capacity for new findings to emerge. Setting: Participants were drawn from two different localities in England, one North, the other South. Interviews with patients and carers took place in their own homes and focus groups with healthcare professionals were held at local hospices. Participants: 38 individuals participated. 15 patients, in the last year of life, and 4 carers under the care of community-based specialist palliative care services and 19 specialist palliative care health professionals (predominantly community palliative care nurses). Findings: The concept of self-management support had salience for patients, carers and specialist nurses alongside some unique features, specific to the end of life context. Specifically selfmanagement was identified as an ever-changing process enacted along a continuum of behaviours fluctuating from full to no engagement. Disease progression, frequent changes in symptoms and sideeffects, led to a complex web of roles and behaviours, varying day by day, if not hour by hour. Data confirmed previously proposed professional roles were enacted to support self-management. Furthermore, as patients, carers and clinical nurse specialists worked together to achieve effective pain management, they enacted and inter-acted in the roles of advocate, educator, facilitator, problem solver, communicator, goal setter, monitor and reporter. Conclusions: The study has demonstrated what self-management support at end of life entails and how it is enacted in practice.

Self-management of patients with advanced cancer: A systematic review of experiences and attitudes

“…Four quantitative 37 , 43 , 56 , 57 and 15 qualitative studies 39 , 45 – 48 , 50 , 52 , 55 , 59 – 63 , 65 , 66 indicated that many patients sought support from relatives and friends (28%–94% in the quantitative studies). This was mentioned as an effective strategy by 61% and 100% of the patients in two quantitative studies on pain management and general symptom management, respectively.…”

“… 45 – 48 , 62 Patients considered maintaining or intensifying relationships with relatives important, because it gave them emotional strength, 45 , 57 , 60 , 65 provided distraction from their cancer symptoms, 62 made them feel important and helpful to others, 62 protected their identities and usual social roles 48 and enabled them to rely on relatives in case their condition would worsen. 39 In several qualitative studies, however, patients also mentioned that they found it difficult to accept or ask for support from relatives and friends, because they did not want to be a burden. 55 , 59 – 63 , 65 Some of them only asked for help when they could no longer perform their usual activities 50 , 60 , 61 , 63 , 66 or restricted their social contacts to close relatives or moments when they felt good.…”

“…responsibility for making and attending medical appointments, decisions on pain treatment approach) to relatives and friends, 47 , 50 , 63 and by delegating or staying in charge of information dissemination from healthcare professionals to relatives or vice versa. 39 , 63 A study among older patients who received outpatient cancer treatment and lived alone in rural areas showed that these patients perceived limited control over practical arrangements (e.g. arranging treatment schedules and public transport back home) and experienced navigating through the healthcare system (e.g.…”

Supporting patient access to medicines in community palliative care: on-line survey of health professionals’ practice, perceived effectiveness and influencing factors

“…The study research questions were derived from patient experiences reported in our previous research [1] and through consultation with local groups of palliative care patients and unpaid carers caring for a family member in the last year of life. The study team includes a Public and Patient Involvement co-applicant, and the Study Scientific Committee includes two Patient and Public Involvement members, whose views have helped shape the survey questions.…”

“…Patients are commonly managing symptoms at home and may experience extensive barriers to accessing essential medicines: our recent study suggested prescription, dispensing, supply and associated information given about medicines 1 are difficult, complex, demanding, lack co-ordination, and involve a multiplicity of professionals [1]. Problems were identified with each element of the access processranging from the time-consuming nature of obtaining new prescriptions, lack of pharmacy stock of medicines required, to limited medicines information and misconceptions [1]. There is very limited research internationally on experiences of accessing medicines for community palliative care, but a few small studies are suggestive of problems.…”