Last Aid and Public Health Palliative Care: Towards the development of personal skills and strengthened community action

When was the first time that you heard about the opportunity to learn First Aid?

For many of us, First Aid training is something we were exposed to relatively early in our personal or working lives. Indeed, the everyday capacity of citizens in the community to engage with suffering from injury or illness in this way might at times be taken for granted by some. The importance of fostering this personal and community capacity is evident where training certification in First Aid is mandated within schools and workplaces, as well as sports teams and other community groups. As the major global First Aid training provider, the International Federation of Red Cross and Red Crescent Societies train around 20 million people every year.¹ Beyond this general First Aid training, there are more specialised forms such as Psychological First Aid and Mental Health First Aid, each with its own defined context and specific purpose. But what about Last Aid?

Simply put, Last Aid can be understood as the practical support and social care to relieve suffering and improve quality of life, that is offered by everyday citizens for those living with life-limiting illness and or approaching end of life. Since its inception in Europe several years ago, the Last Aid Project has provided public education for citizens about the fundamentals of palliative care and, in doing so, has supported care of the dying using materials developed by Last Aid International.² To date, over 27,500 citizens have already participated in Last Aid courses and more than 2,000 Last Aid instructors have been trained across European countries including Austria, Denmark, Germany, Lithuania, Scotland, Slovenia and Switzerland.

With the recent introduction of Last Aid in Australia, by Palliative Care Queensland, the global delivery of Last Aid courses is growing rapidly; this is evident in proceedings of international Last Aid conferences in Denmark (2019) and Slovenia (2020), and advances in this area are also supported through the European Association of Palliative Care’s Taskforce on Last Aid and Public Palliative Care Education. Established by an international working group, the Last Aid curriculum spans four modules (45mins each) addressing the themes of (1) Care at the end of life; (2) Advance care planning and decision making; (3) Symptom management; and (4) Cultural aspects of death and bereavement.² This content is reflected in the everyday language of the corresponding module titles:

1. Dying as a normal part of life;

2. Planning ahead;

3. Relieving suffering; and

4. Final goodbyes.

Importantly, the co-facilitation of Last Aid courses is not limited to palliative care professionals – active involvement from everyday citizens (usually with a personal experience of palliative care) as trained instructors within local communities is supported and encouraged. So, beyond the mere provision of a lecture with educational pamphlets, Last Aid courses can offer an inclusive learning forum that is enriched by the combined expertise of both formal and informal caregivers within a community setting. In addition to providing education about death and palliative care, Last Aid courses encourage citizens to talk about death and dying in general, which may contribute to normalising these discussions more broadly in society.

From its development and implementation to date, potential synergies between Last Aid courses and public health palliative care are apparent. With palliative and end-of-life care increasingly viewed as everyone’s responsibility,³ there is a need for community engagement that recognises the inherent assets of social capital whilst building community capacity for the social and practical challenges faced by social networks at the end of life.^4,5 Indeed, Bollig and colleagues describe Last Aid courses as a potential ingredient of compassionate communities.² However, there is a need to better understand the possible contribution of the Last Aid movement to public health palliative care.

To this end, we suggest the main aims of the Last Aid movement – to raise citizens’ awareness and knowledge of palliative care and to equip them to care for seriously ill and dying people at home – are consistent with the theoretical underpinnings of health promoting palliative care. As highlighted by Rosenberg and colleagues,⁶ public health palliative care ‘challenges ingrained hierarchies of professional power … whilst urging communities and service providers to build death literacy’. Specifically, we suggest a potential capacity building contribution to compassionate communities in alignment with the Ottawa Charter for Health Promotion action areas⁶ of developing personal skills and strengthening community action (Fig. 1).

Figure 1 Individual and collective capabilities in compassionate communities.

In the same way that compassionate communities rely on strong community action, the extent of community action will be influenced by the knowledge and personal skills of individual community members. Indeed, this is fundamental to the growing understanding of ‘death literacy’, which builds on individual experiences to create collective capability to support those nearing the end of life or bereaved.⁷ Thus, a combination of individual and collective capability contributes to the establishment and ongoing success of compassionate communities.

The provision of health education to build health literacy is not new to those working in palliative care; palliative care services have long provided this type of education. But public education about palliative care is traditionally grounded in service-provision models where patients and families or carers receive education to supplement the care provided by a palliative care service. Viewed through a health promotion lens, this type of education represents a ‘downstream’ intervention and is thus limited in its reach to clinical populations only. However, there is a growing need to extend the remit and focus of education further ‘upstream’ to non-clinical populations in a targeted manner that can better enable and build community capacity for practical support and social care at the end of life. That is to say, education about palliative and end-of-life care is equally important in clinical contexts as it is across social contexts and in mainstream community settings. This importance is underscored by a recent review of the literature highlighting poor public knowledge and awareness, as well as misperceptions about palliative care over time.⁸

Perhaps the most obvious strength of the Last Aid movement is its juxtaposition with First Aid and the subsequent traction that may be realised within communities. Thus, citizens understand Last Aid more readily as a supplement to First Aid for people approaching the end of life which helps to normalise palliative care. The language of Last Aid offers accessible means to engage the general public not only in conversations about death, dying and grief, but also in practical action to provide meaningful support as everyday citizens within compassionate communities. Whilst the general linkage of Last Aid to the compassionate communities movement has already been introduced,² future curriculum development and research evaluation in this area may benefit from more explicit alignment with health promotion practice principles in the context of public health palliative care. Research to investigate the effects of Last Aid courses on people’s willingness to provide palliative care at home and the number of home deaths would be valuable.

Demonstrating the outcomes of Last Aid courses in this way will be an important priority into the future. As the Last Aid curriculum evolves and adapts to different cultures and locations around the world, outcome evaluation might usefully focus on variables such as death literacy, personal skills and community action. Extending the reach of Last Aid courses and their evaluation to key populations such as teenagers and school children will also be important. There is early evidence to suggest these represent promising areas for growth, with potential for content to be incorporated into school curricula.^9,10 As with the case of First Aid training in schools, it may also be important to evaluate knowledge retention after participation in a Last Aid course.¹¹ In light of social distancing restrictions applied during the COVID-19 pandemic, facilitation of online Last Aid courses will be another important consideration for delivery and evaluation into the future. First experiences with Online Last Aid courses in Germany show that people appreciate this mode of delivery in times where onsite participation is not possible.

In this paper, we have introduced the concept and practical application of Last Aid within the broad context of public health palliative care. More specifically, we have outlined a potential capacity building contribution to compassionate communities in alignment with the Ottawa Charter for Health Promotion action areas of developing personal skills and strengthening community action. Further, we briefly discussed potential research directions for the future evaluation of Last Aid course outcomes.

We conclude by proposing the introduction of an annual World Last Aid Day to heighten global awareness and promote greater public engagement with social and practical aspects of palliative and end-of-life care. Whilst the existing World Hospice and Palliative Care Day and Dying to Know Day already serve to help raise general awareness, curiosity, and begin to break down stigma around death and dying – we envisage that a World Last Aid Day would expand on this foundation to elicit more practical engagement to build broader recognition of palliative and end-of-life care as everyone’s responsibility.

Disclosure of interest

Last Aid and its curriculum was developed by GB. All authors currently facilitate Last Aid Courses as trained instructors.