Self-management support at the end of life: Patients’, carers’ and professionals’ perspectives on managing medicines
Introduction
Self-management support has been well elaborated and tested, and programmes of support offered in the context of chronic illness (Taylor et al., 2014). In contrast, in the situation where someone is rapidly approaching the end of life there is much less evidence of if and how this concept applies (Hughes et al., 2016). Johnston is one of a handful of authors to have addressed this, who along with colleagues (2009), argued that benefits of self-management focused symptom control include improved health status, reduced hospital admission, reduced pain and symptom distress, and can result in people feeling in more control with respect to pain and more prepared for end of life. Through recourse to concept analysis self-management support in palliative nursing has been defined as: “assessing, planning, and implementing appropriate care to enable the patient to live until they die and supporting the patient to be given the means to master or deal with their illness or their effects of their illness themselves” (Johnston et al., 2014, p8). Eight professional nursing roles that support self-management: advocate, educator, facilitator, problem solver, communicator, goal setter, monitor and reporter were outlined. Whilst these nursing roles were depicted they were neither described nor characterised and little is understood about how they are operationalised in the context of practice. Hence there is a lack of knowledge about self-management support in the context of end of life care with little evidence with which to underpin practice.
In one of the only studies in this area, Schumacher and colleagues in the US (2014a&b) have studied the self-management work that goes on in relation to pain medication management in cancer patients. Their research revealed that much of what goes on involves work that is challenging and frustrating for patients and could be alleviated by better information, skills and health services co-ordination to support patient self-management. The work of getting prescriptions, obtaining medications, understanding, organising, storing, scheduling, remembering, and taking was perceived to be “unending” and required a huge amount of effort in order to navigate healthcare systems and often resulted in frustration and anxiety. As the sample consisted of oncology out-patients whether these findings might transfer to the specific context of end of life care was not clear.
Given there is limited understanding of if and how the concept of self-management support might be applied in the context of end of life care we set out to investigate the concept further, exploring its application through accessing the perspectives of patients, carers and health professionals. We defined carers as anyone who cared, unpaid, for a friend or family member due to their end of life illness.
Section snippets
Aims/objectives
The study aimed to describe, characterise and understand the concept of self-management support as the end of life approaches, in the specific context of managing analgesia and related treatments. This work formed part of a larger study involving intervention design and a feasibility trial of self-management support in relation to opioid medications for pain relief, and the associated side-effects of nausea, constipation and drowsiness at the end of life (Bennett et al., 2017).
The objectives
Study design
A qualitative approach was used and data collection comprised focus groups and interviews, held within two geographical regions in England (one North and the other South).
Participants
Participants included patients, their carers and specialist, largely community based, palliative care health professionals (including service managers and commissioners).
Sampling Strategy and Recruitment
Inclusion criteria
Patients were included if they were:
- 1.
Aged over 25 and considered (by their specialist palliative care team)
Findings
The sample comprised 38 participants recruited across the two regions: 15 patients, 4 carers and 19 healthcare professionals (Table 1). The findings are presented in two discrete sections. The first section characterises the range of self-management and self-management support roles adopted by patients, carers and nurse specialists as they relate to pain medicine management. Secondly, these data are incorporated into a model of self-management support, alongside a description of the continuum
Discussion
The majority of end-of-life care takes place in the home, being undertaken by patients and carers and supported by health care professionals, often nurses. Effective management of medicines in this context is critical for symptom control, quality of life, avoidance of unplanned and emergency services and hospital admission. Equipping and supporting patients and carers to self-manage this important task is a key nursing responsibility. Yet little was known about how self-management is enacted in
Conclusion
Our study has demonstrated for the first time what self-management support at end of life entails and how it is enacted in practice, in relation to analgesia and related treatments. The concept has highlighted the importance for specialist nurses of recognising the roles that patients and carers play, alongside their own, and the factors that impinge on them. Skilled on-going assessment is central to this, as well as the requirement for the specialist nurse to adjust his or her own roles and
Acknowledgements
Participant acknowledgement: The authors gratefully acknowledge and thank all the study participants (patients, carers and healthcare professionals). Without their participation the study would not have been possible.
Funding acknowledgement: This project was funded by the National Institute for Health Research [HTA programme] (project number 12/188/05).
Department of Health disclaimer: The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the
References (15)
- et al.
Stroke self-management: a focus group study to identify the factors influencing self-management following stroke
Int. J. Nurs. Stud.
(2015) - et al.
Self care and end of life care in advanced cancer: literature review
Eur. J. Oncol. Nurs.
(2009) - et al.
Pain medication management processes used by oncology outpatients and family caregivers part I: health systems contexts
J. Pain Symptom Manage.
(2014) - et al.
Pain medication management processes used by oncology outpatients and family caregivers part II: home and lifestyle contexts
J. Pain Symptom Manage.
(2014) - et al.
Self-Management of Analgesia and Related Treatments at the End of Life (SMART): A Feasibility Study. Final Report to NIHR HTA
(2017) - et al.
Self-management and self-management support outcomes: a systematic review and mixed research synthesis of stakeholder views
PLoS One
(2015) Patient Participation: The Literature. Royal College of Nursing Research Series
(1990)
Cited by (15)
Access to palliative care medicines in the community: An evaluation of practice and costs using case studies of service models in England
2022, International Journal of Nursing StudiesFactors associated with pain at the end-of-life among older adults in Mexico
2021, Public HealthCitation Excerpt :The role of other chronic conditions like diabetes on pain is less clear;16 however, this association is worth investigating given the high prevalence of diabetes in Mexico. Other factors modulate pain intensity, such as good interpersonal relationships, family and social support, and mood.17–20 This association is also worth investigating, given that family care is common for older adults in Latin American countries like Mexico.
Managing Medicines for Patients Dying at Home: A Review of Family Caregivers' Experiences
2018, Journal of Pain and Symptom ManagementCitation Excerpt :Yet, for others, symptoms such as pain, delirium, and agitation in the last days of life can be extremely distressing.19 Evidence indicates that challenges to the optimal use of end-of-life care medicines, including opioids20–22 and anticipatory medicines,23–26 occur at every stage of prescription, supply, and use. Further to this, health care professionals (HCPs), including general practitioners (GPs) and the community nurses who are most directly involved in patient care, are reported to lack confidence, engagement, and training in managing terminal pain and other symptoms.24
Psychosocial vulnerability among carers of persons living with a chronic illness: A scoping review
2022, International Journal of Nursing Practice