Public awareness and attitudes toward palliative care in Northern Ireland

The World Health Organisation [1] has advocated palliative care as being a public health issue: access to such care is acknowledged by United Nations conventions as a human right [2]. Although many governments generally adhere to this claim, placing palliative care within public health strategies, translation into practice varies widely. Awareness of palliative care varies widely according to international research to date [3‐6] (Table 1). A telephone survey of 667 Irish adults [3] reported that many people were unfamiliar with the terms associated with palliative care and end of life. This low level of awareness may have implications for care, lead to negative impressions and impact on equitable access to services, resulting in negative consequences for the quality of care provided to the dying and bereaved [7‐11]. European research suggests that this lack of awareness and recognition of palliative care among members of the general public is a key barrier to its future development [12]. Given that the western world’s population is aging, with greater incidence of cancer and a higher prevalence of chronic conditions [13, 14], the demand for high quality hospice and palliative care services will undoubtedly increase. Within Europe, however, it has been noted that variations in access to care and care quality persist. Whilst the United Kingdom (UK) is acknowledged as leading in the development of palliative care services [15], historically there is a lack of understanding of the concept of palliative care and little is known about the awareness of the availability among members of the general public [16‐19]. This is in contrast to the increasing profile of palliative care as a key national and regional strategic priority area [20‐22]. Such initiatives have contributed to National Campaigns, such as Dying Matters, led by the National Council for Palliative Care [23] to specifically raise public awareness and change behaviour associated with death, dying and bereavement. To date, public awareness of palliative care, and what strategies should be used to target awareness, has received little attention from researchers. A detailed and comprehensive understanding of public views is needed in order to target education and policy campaigns and to manage future needs, expectations and resourcing of end of life care. Thus the aim of this study was to explore public views towards palliative care and explore strategies to improve awareness see.

A total of 600 people responded, giving a 17% response rate. Whilst this is lower than anticipated, it does represent a substantial response and the sample size achieved was in excess of that required to provide a confidence level of 95% in the primary outcome, self-assessed knowledge of palliative care. The majority of participants were female (n = 413, 69%) and the modal age group was 60–69 years. Ethnic origin was mainly white (n = 549, 92%) and the most common religious denomination was Protestant (n = 249, 42%) followed by Roman Catholic (n = 194, 32%). Analysis revels that the majority of respondents were married and most declared their denomination as Protestant. The religion and ethnicity of participants broadly represent Northern Ireland’s population (see Table 2).

The results of this study are in line with the emerging international literature on public awareness of palliative care, which has suggested variable (or inadequate) awareness of palliative care among the general public [5, 6, 16]. This variability extends across studies undertaken over the last decade in countries such as Canada, United Kingdom, Europe, Japan, Australia and New Zealand. It could be argued, that there does appear to be some change in recognition of the importance of public awareness of palliative care in adopting a public health approach to palliative care. According to Paul and Snallow [30] this has been driven by policy, practice and theoretical literature both within the UK and globally. The theoretical basis for the public health approach to palliative care has been led and developed in Australia by the work of Kellehear and O’Connor [31] and Kellehear [32]. Various international examples from India [33], Australia [31]; and the UK [34], have clearly demonstrated the importance of such approaches in increasing access to palliative care services and improving understanding and awareness. This remains however a largely under-researched area, despite being recognised as a significant policy priority. Further research is needed to examine the impact and evidence for such interventions, hence providing further clarity on the public health approach to palliative care.

The findings in this study indicated that while many members of the public had heard of the concept of palliative care, there was a clear lack of familiarity and awareness of what palliative care really means. A repeated theme, borne out in this study, was the key influence of having a close friend or relative accessing palliative care services upon increased awareness and familiarity with the concept and services. There was a general tendency to identify palliative care goals in line with pain relief to provide comfort and dignity at the end of life to elderly cancer patients. Respondents emphasised the patient’s clinical needs. Yet this is in stark contrast to the World Health Organisation [1] advocating that palliative care should not only improve the quality of life for patients but also for their families, being available from diagnosis regardless of condition or age. This is important to consider when set against the backdrop that over the last decade in the UK, there has been considerable government and media attention devoted to raising public awareness of palliative care.

Of significance is the discussion around preferred place of care. The findings from this study indicate that the vast majority of respondents were aware that palliative care would be delivered across a range of health care settings such as hospice, and hospital, however the preferred place of care for a patient with palliative care needs was identified as the family home. Achievement of preferred place of care for terminally ill individuals has increasingly been used as a quantifiable indicator of the effectiveness of palliative care services [35]. Whilst population studies have indicated that the majority of people would prefer to die at home, secular trends towards an institutionalised death have been reported in many countries [36]. In expanding this debate it is important to note that whilst home represents the preferred place of care and death for the majority of terminally ill individuals [37], this wish was certainly not shared by all. These factors contribute to a much wider debate on the provision of palliative care as an international human right, promoting choice, autonomy and equity of access to services for all, without discrimination [38].

The perceived barriers to raising awareness of palliative care centred upon social and cultural taboos and limited resources. Perhaps of greatest interest is the recognition among the majority in the sample of a lack of coordinated approach and communication among health and social care service providers as a key barrier. This insight may be a contributing factor to variability of awareness of palliative care, impacting on perceptions and use by those patients and families who require it. This indicates that raising public awareness cannot be undertaken in isolation but requires the concept of palliative care to be brought forward within the delivery of health care systems.

Whilst the majority of respondents had heard of the term palliative care, findings revealed inadequate understanding of the concept. Low levels of understanding highlight the need for a parallel approach ensuring that palliative care is more integrated into health service systems alongside a continued public health approach to palliative care in order to eradicate social taboos and ensure such services are sought out when required. Future research should focus on mechanisms to integrate palliative care more fully into the health system, contribute to the conceptual basis for public health approaches to palliative care and the evaluation of different strategies to increase public awareness and understanding of palliative care.