Alison Richardson, Professor of Cancer Nursing & End of Life Care; Sue Latter, Professor of Nursing; and Natasha Campling, Senior Research Fellow at the Faculty of Health Sciences, University of Southampton
Alison, Sue and Natasha formed part of a research team, led by Mike Bennett, Professor of Palliative Medicine at the University of Leeds. We worked together to conduct a feasibility trial assessing the acceptability and uptake of SMART (Self-Management of Analgesia and Related Treatments at the end of life). It was developed using an iterative co-design approach with patients, family caregivers and specialist palliative care nurses, doctors and pharmacists. The aim of the feasibility study was to assess the acceptability and uptake of SMART within community palliative care services and evaluate the feasibility of undertaking a definitive trial of effectiveness. This work was funded by the National Institute of Health Research.
Understanding self-management at the end of life
As part of the trial a detailed analysis of the reality of the work that patients, caregivers and nurses do to support self-management of medicines used to manage symptoms at the end of life was undertaken (for more details see Campling et al 2017).
We know the symptoms that often accompany the end of life can be well-controlled through careful prescription and titration of medicines. If this is done well, symptoms can be alleviated, and patients can remain at home. But little is known about the way in which self-management is enacted by patients and supported by caregivers and nurses in the home, particularly at the end of life. We built on our research strengths in end of life care, medicines optimisation and self-management, to chart this unexplored area.
We interviewed patients, caregivers and nurses involved in end of life care. Our data highlighted that patients, caregivers and nurses operate in a number of roles to support self-management – these range from advocate to facilitator and communicator. The extent to which patients and caregivers self-manage their medicines is also highly variable, changing rapidly and frequently according to a context characterised by rapid disease progression, fluctuating symptoms and medicines’ side-effects. This complexity is further compounded by patents’ and caregivers’ fears and misconceptions about opioid medicines.
What it means for nurses
Our findings revealed the extraordinarily complex work demanded of specialist nurses whilst supporting people at home as the end of life approaches. Effective support for self-management in this context requires highly skilled, individualised and ongoing assessment of patient and carer needs to detect changes in competence and preferences for engagement and responsibility. Nurses need to constantly adapt their support style and assume roles that shift and complement changing patient and carer preferences. The prominence of opioid-related fears, in addition to frequent changes in patients’ medicines and polypharmacy, means that provision of information and education to allay fears, challenge misconceptions and enhance understanding of medicines’ actions and side-effects is important in achieving effectively supported self-management.
We used the components of self-management support (assessment and education) identified through this detailed work, along with goal-setting, monitoring and coaching to form the basis of the SMART intervention. It was delivered by specialist community palliative care nurses largely through a conversational approach, and tested in the feasibility trial. Some of the nurses rapidly integrated the self-management focused approach into their day-to-day work, whilst for others it took considerable thought and practice over a number of weeks. We learnt a great amount about how we might structure training and supervision to ensure intervention fidelity in any larger trial.
The study confirmed the feasibility and acceptability of the trial design and intervention. We plan to evaluate this further in a full-scale trial.
Campling, N., Richardson, A., Mulvey, M., Bennett, M., Johnston, B. & Latter, S., (2017). Self-management support at the end of life: patients’, carers’ and professionals’ perspectives on managing medicines. International Journal of Nursing Studies. https://doi.org/10.1016/j.ijnurstu.2017.08.019