PALLIATIVE CARE

Palliative care in the community: reflections from 2013 Brian Nyatanga

Brian Nyatanga is Senior Lecturer in Allied Professional Studies, University of Worcester  

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s we enter a new year, it is time to reflect on the year gone by for two reasons: the key issues and challenges encountered, and how to make a difference in 2014. First of all, I have to be bold and say that one thing has remained constant throughout 2013: people continue to die in the community and this has an emotional and psychological impact on those who are important to them. This trend of dying will certainly continue in 2014, so we need to look closely at continuing to enhance patient experience. For community nursing, the need for high-quality palliative care remains at the top of the agenda as more and more people choose to die at home. On the whole, the commitment to caring in community nursing has been encouraging despite the numerous challenges. Throughout last year, this column focused on some key issues and challenges in providing palliative care; offered insights into how we can better understand the guiding principles of palliative care; provoked timely debate about pertinent issues such as assisted dying; and talked openly about death, survivorship and the plight of homelessness.

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Homelessness in the UK Some patients, such as those from black and minority ethnic groups, prisoners and the homeless, remain marginalised and vulnerable, and are a cause for concern when it comes to receiving palliative and end-of-life care. If we look at homeless patients in particular, there are numerous circumstances and explanations for their status. Some are to do with the individuals themselves: lack of education, difficult family and financial situations, mislaid priorities, or peer pressure leading to unfavourable habits like alcohol and drug abuse. Other factors are external, where the system has let them down and they have ended up unemployed. It could be argued that ‘homeless’ is a misnomer because the concept of home is always present, despite the absence of a physical roof over someone’s head. A more accurate word might be ‘houseless’, as these people sleep rough out on the streets, on pavements, in underground tunnels (in London) and under bridges. Although there is a government ministry responsible for housing people, it is surprising that the problem of houselessness remains unresolved. The irony is that we often see large acres of land being used for golf and horse-racing courses, when these are activities often enjoyed by a minority of people. This is a painful truth, particularly for a society that prides itself on caring and compassionate communities. If we look at each county across the UK, and compare golf courses with hostels, there is a disproportionately high

British Journal of Community Nursing January 2014 Vol 19, No 1

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number of golf courses, of disproportionate size. This is not an argument against golf or race courses, but rather against the lack of balance in the use of land in relation to the plight of houseless people and their palliative-care needs. Where is our sense of community, which is supposed to reflect societal values of looking after each other? Such discrepancy in care goes against the aims of Quality End of Life Care for All (QELCA), a project previously discussed in this column, which strives for high-quality end-of-life care for all.

Caring for the bereaved We also need to think of patients’ relatives, friends and acquaintances, as they too are affected by the death or dying of their loved ones. High-quality palliative care helps the bereaved to negotiate their loss and manage their grief. Community nurses can play a significant role in their care and support. This is even more important when we consider patients who are also prisoners; they pose a big challenge, as they are kept in a penal environment that contrasts starkly with the caring palliative environment we all believe in. For example, prisoners who are close to dying are still handcuffed to the bed when it is clear that they can no longer be a danger to themselves, let alone to society. Last year, we read reports and saw pictures in The Guardian (Allison and Hattenstone, 2013) about a dying patient being chained to his bed while going for a hospital appointment. This practice is morally wrong and should not be happening in 2014 or beyond. I see the two philosophies of imprisonment and palliative care as polarised, but caring for dying patients can be reconciled through negotiation with prison officers.The legal system needs a rethink to find more humane ways of treating dying patients, even if it is only for the benefit of those who are to be bereaved.

Enhancing communication skills The year 2014 should see us all improve our communication skills, which are key to patient support and to raising selfawareness. The Connected Advanced Communication Skills course is still being offered throughout the majority of NHS Trusts and hospices, facilitated by accredited tutors over 2 or 3 days to suit time demands. If we are able to deliver care that we would welcome ourselves as patients, palliative care provision can be different and better in 2014. BJCN Allison E, Hattenstone S (2013) Dying in chains: why do we treat sick prisoners like this? The Guardian. http://tinyurl.com/nawuvnv (accessed 27 November 2013)

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