Palliative care in the community: the complexity of service provision

Abstract

Care of people in the last period of their lives frequently falls to nurses working in primary care, and can be a rewarding and satisfying component of our work (Department of Health (DH), 2008). Nurses with different roles, working in various settings, will be involved throughout the patient’s disease trajectory. Familial carers may also have contact with health services in a number of guises, whether it be for their own health, or that of their family member. Some of these services will be specialist palliative care services, some will be generalist services providing palliative care; others may not identify with the ‘palliative’ title, but their care provision may overlap, as they offer interventions to people affected by advanced disease. This could include district nurses, Macmillan nurses, Marie Curie nurses, health or social-care workers, clinical nurse specialists, community matrons, practice nurses, outof-hours community nursing, and other locally-developed services. This is of course in combination with medical services and allied health and social-care professionals. Among this plethora of services, patients and their families have to navigate their way through these networks to get their care needs met. Often, this will be their first experience of a system, which can be confusing to even experienced health professionals. Different roles, functions, uniforms, hours of work, and contact details can add to the confusion. Service users must make daily decisions in relation to the services involved in their care: who should I contact when a new symptom is present? How do I get hold of them? Has his condition got so much worse that I need to ask for extra help? What is the role of the person who is visiting today and should I direct my questions to them? At a time when people are facing multiple changes in their experience of being-in-the-world, there is a danger that, as service providers, we can potentially add to the uncertainty of their unfamiliar situation. The recent Palliative Care Funding Review (2011) suggests that a core element of good palliative care services should be that someone coordinates the care of the patient, a complex and multifaceted role that would work across organizational boundaries to ensure that the patient and their family get all the care they need. There are, however, known difficulties in introducing additional roles into the primary care environment. Recent examples of new services that have a role in palliative care provision, such as the community matron, demonstrate the complexities of professional identities, roles and relationships in primary care (King et al, 2010). The introduction of a palliative care coordinator has the potential to improve the care experience of people affected by advanced disease, but only if other key stakeholders involved in palliative care accept its additional value and recognize its unique contribution to the multidisciplinary team. I hope that, as organizations look to introduce this service, consideration is given as to whether existing stakeholders could undertake this function, how it will integrate with existing teams, and that specific work is undertaken around acceptance of this new way of working. At the University of Huddersfield, we have been conducting research into experiences of these complex networks involved in the care of people affected by advanced disease. It can be difficult for people to discuss and describe these situations and we have found that often service users, in particular, are uncertain as to the names and roles of the various people who they have contact with – they are the ‘nurse who wears blue and visits on a Thursday’, or the ‘nurse from the clinic’. It is important that we understand what it is like for people involved in these situations, as well as how these networks function in practice; therefore, to facilitate information sharing, we have been using a technique called ‘Pictor’. This is a simple visual technique that helps people to reflect on and communicate their experiences of situations involving multiple agencies, and has proved to be very facilitative of information sharing in research interviews (Hardy et al, in press). We all have a role to play in helping patients and their families effectively navigate care systems, whether this is through reflecting on our own clinical practice, breaking down barriers to develop effective collaborative working, introduction of new roles to help coordinate care, or through research to enhance understanding of this complex area of care delivery. By striving for improved practice, we can all help to make palliative care a less complicated environment for people who need to access these services. BJCN