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

https://doi.org/10.1016/j.ijnurstu.2017.08.019Get rights and content

Abstract

Background

Pain is a frequently reported symptom by patients approaching the end of life and well-established 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 self-management 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 side-effects, 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.

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)

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