Abstract
Introduction
Palliative care is defined is an approach to care that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual (World Health Organisation, 2006). In 2014, the World Health Assembly passed a resolution calling for all member states to develop, strengthen and implement palliative care as part of universal health care covered (World Health Organisation, 2014). Despite this, many services remain underdeveloped and even non-existent in many parts of the world. Changing demographics, such as an ageing population and an increase in comorbidities, have resulted in an increase in the number of people requiring palliative and end-of-life care (EoLC) across different conditions, settings and services. Globally, it has been estimated that, in 2014, 20 million people worldwide required palliative care at the end of life (Worldwide Hospice Palliative Care Alliance, 2014). A recent Lancet publication on the future burden of serious health related suffering requiring palliative care estimated that, by the year 2060, 48 million people (47% of all deaths globally) will die with serious health-related suffering, and that this need will increase most rapidly amongst people over 70 years of age, with dementia as the condition with the highest proportional increase (Sleeman et al., 2019). Such stark figures highlight not only the importance but also the ethical, moral and professional need for action and for robust palliative care research that will both enhance services and care (McIlfatrick et al., 2018). That is why this focused edition on palliative care is timely and of vital importance, particularly for nursing.
The papers in this edition, developed from authors from the UK, Ireland, Europe and Canada, can be structured into four interrelated themes that reflect many of the core elements contained within the WHO definition, outlined above. These are: (a) social inclusion and focus on vulnerable groups for example, learning disability (Northway et al. and Arrey et al.); (b) palliative care and non-malignant disease for example, dementia (Kaasalainen et al.) and respiratory disease (McVeigh et al.); (c) different care settings for example, long-term care (Kaasalainen et al.) and hospital settings (Vanderhaeghen et al.); and (d) recognising the needs of carers (McVeigh et al.). These papers are important not only in terms of individual contribution to each specific theme but also in demonstrating diversity of methodological approaches. For example, methodologies in this edition range from systematic review (McVeigh et al.), Delphi consensus methodology (Vanderhaeghen et al.); phenomenology (Arrey et al.), case study (Brogan et al.), multiple methods focusing on evaluating educational intervention (Kaasalainen et al.) and population-based survey (Northway et al.). As might be expected in palliative care research, each of the studies addressed complex and ethically sensitive matters, with significant and diverse challenges in relation to recruitment, consent and sampling approaches.
Within the first theme – social inclusion – the two contrasting papers focused on learning disability. Arrey et al. sought to gain an in-depth understanding of the care strategies used by staff (both learning disability nurses and specialist palliative care professionals), when caring for a person with a learning disability, whilst Northway et al. sought to ascertain to how and when nurses in the UK were involved in the care of people with a learning disability towards the end of life. Whilst both these studies were diverse in their approach, some similarities can be noted. Both papers provide an interesting insight into the staff, environment, and education required when caring for a person with an intellectual disability towards the end of life. Northway et al. found that nurses play a key role in the care of people with learning disability at the end of life, across different health care settings, but that they require education and a review of curricula to enable this to happen. One aspect of education relates to the need for good communication, indicated clearly in the phenomenological study by Arrey et al. It was interesting to note that Northway, in her commentary on Arrey et al.’s paper, noted the focus on positivity as a key finding, reminding practitioners of the need to use reflection for positive outcomes on care and not to focus just on the negative aspects. It can be argued this is an important consideration for palliative care and EoLC.
The second theme in this edition emphasises the importance of palliative care and non-malignant disease. Research evidence is increasingly indicating the need for earlier integration of palliative care and to move beyond focusing on cancer care (World Health Organisation, 2014). This is of importance in the context of the increasing need for palliative care and future global health care burden. Dementia is a life-limiting disease, with research evidence indicating the need for a palliative care approach to care. With many media stories questioning the quality of care provision within long-term care settings, it was very encouraging to read about the study by Kaasalainen and colleagues exploring the experiences associated with the implementation of Namaste Care in Canadian long-term care (LTC) settings. This paper evaluated a specific intervention, otherwise known as Namaste care, which comprised a 2-day education programme delivered in LTC facilities in Canada. The authors clearly contributed to the evidence base for developing such interventions, but also addressed a gap in terms of focusing on staff members, helping to answer questions on processes and experiences, whilst also considering questions of sustainability of such interventions. As Arrey noted in her commentary, effective training can be considered synonymous with the effective delivery of holistic and quality care for people with dementia and their family carers. This theme is further expanded, within McVeigh et al.’s critical overview of the literature for people with non-malignant respiratory disease (NMRD) and their carers. This review reinforced the high symptom burden associated with such conditions, and that provision of, and referral to, palliative care services for this group of patients is often suboptimal. McVeigh et al. noted that, to date, the majority of research has focused on patients with a diagnosis of chronic obstructive pulmonary disease (COPD), further research is advocated for those with other forms of non-malignant respiratory disease such as bronchiectasis and interstitial lung disease.
Given the fact that the World Health Organisation's (WHO) definition of palliative care indicates the important role of carers, McVeigh et al.’s critical overview of the literature also highlighted the importance of having a focus on the needs of carers. Farquhar, in her commentary, noted that this was a key strength of this paper seeking to contribute to the increasing research agenda identifying and addressing the unmet needs experienced by carers.
The final two papers in this edition speak to the complexity of considering palliative care across different health care settings. Vanderhaeghen et al. investigated the barriers and enablers for hospital professionals such as physicians, nurses, social workers and psychologists when having advance care planning (ACP) conversations in hospital settings. ACP has received increased recognition and discussion in recent years in the palliative care literature. In a review of the literature, Brinkman-Stoppelenburg et al. (2014) noted that ACP interventions resulted in increased compliance with patient preferences and satisfaction with care. However, there remains a dearth of research investigating the key benefits and implications for practice. Filkins, in her commentary, noted that three facilitatory elements need to be in place; (a) education concerning ACP; (b) sharing of information within multidisciplinary teams; and (c) encouraging professionals to share the benefits of ACP in this setting. Conversely, Brogan and colleagues offer some insight into the contribution of case study as a research approach that enables in-depth understanding of experience and complex systems within changing contexts. They conclude that this is of relevance for palliative care research and practice.
This focused edition on palliative care clearly demonstrates the diversity and importance of palliative care provision across boundaries, settings, conditions and time. Therefore, everyone, regardless of setting, will encounter people with palliative care needs, and it is important that practitioners reflect on their practice as we all only have one opportunity to get this right and ensure high quality palliative care for patients and their families.