Ali, Abid
(2021)
A qualitative investigation of lay and professional perspectives of community pharmacy extended palliative care services.
PhD thesis, University of Nottingham.
Abstract
In the UK, an increasingly ageing population has expanded the patient population affected by multiple morbidities and palliative care needs. Patients report having complicated medicine regimens, a high incidence of problematic polypharmacy, and significant medication management problems. Growing numbers of patients opting for home-based palliative care, and in the absence of adequate support, they are faced with an increased burden of care. Furthermore, family caregivers accept this burden without formal training or regular outside support. As a result, patients and family caregivers have considerable unmet pharmaceutical needs. This environment presents an urgent need to explore the potential for community pharmacists, who traditionally have had limited involvement, to help support patients, family caregivers and existing palliative care services.
Aim: This research aims to explore patients, lay family caregivers, and health care professionals’ views of current community palliative care and the role and scope for future expansion of community pharmacy in this domain.
Methods: Underpinned by a constructivist methodology, this was an exploratory qualitative study involving forty-four in-depth, semi-structured interviews. These included patients receiving palliative care (n=10), family caregivers (n=10), pharmacists (n=13), general physicians (GPs) (n=6), and community nurses (n=5). The qualitative software program NVivo 12 was used to facilitate a thematic analysis of the data.
Results: Most patients and family caregiver participants were unfamiliar with the holistic underpinnings of palliative care and understood this to be a “care package” focused solely on the “dying phase”. There was a strong emotional feeling, a sense of helplessness and “giving in” considering the heightened challenges and difficulties in the coming days. The community pharmacist was perceived as an accessible and trustworthy healthcare professional. Most lay participants considered pharmacists presently have a minimal role in their palliative care needs. However, they would welcome additional support from community pharmacies around medicine management, a better understanding of treatment regimens in the palliative phase, and timely availability of medicines.
GPs and nurses reported increasing healthcare demands associated with community palliative care provision. They recognised the benefits of engaging community pharmacists and welcomed any load sharing with them. Importantly, however, GPs stressed that ultimate care responsibility should stay with GP practices. Pharmacists took a reserved approach towards increased participation. They pointed out the lack of funding arrangements, structure, and training needs as primary areas of concern. Nevertheless, there was an overarching willingness among community pharmacists to contribute further once suitable service specifications were laid out.
Discussion: Palliative and end-of-life care is often challenging and distressing for patients and family caregivers, combined with increased care needs. However, in the community, these needs are not consistently recognised in time and often remain unmet. Three main themes with important recommendations emerged from the study. Firstly, community pharmacists could do more to advance their involvement in palliative and end-of-life care needs. However, such expansion should be built upon a solid foundation of medicine supply obligations. Secondly, a carefully planned service specification is essential for greater community pharmacy inclusion in palliative services. Lastly, community pharmacy should be recognised as a specialisation. Rather than having limited specialist palliative care pharmacists in primary care networks, community pharmacists should be encouraged to take on extra palliative care services as part of their general repertoire. A greater community pharmacy involvement could help increase the availability of timely and responsive palliative care closer to the patient’s home. This study provides a strong justification for future research and a potential community pharmacy intervention to investigate additional services for patients receiving palliative care or their family caregivers. The study has important implications for future community pharmacy service development as the findings indicate areas of unmet need in community palliative care services, which are within the expertise of community pharmacists to support.
Conclusion: This study expands our knowledge of the community palliative care landscape. It explored the significant problems patients, and family caregivers face against the scope for greater community pharmacy participation. There was an overarching theme of willingness among community pharmacists to expand their current service repertoire to cater more for the unmet pharmaceutical needs in community palliative care, providing contractual issues that could be agreed upon and adequate workforce training in place. GPs welcomed such additional services to reduce their current workload pressures. Future studies should evaluate the scope and implementation of extended community pharmacy support for community palliative care services.
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