The social work contribution in end-of-life care

End-of-life care should be an interdisciplinary endeavour, and in this journal, the social aspects of that work are foregrounded. Yet there still seems to be a lack of clarity around the social work contribution, which is an irony given that it has a multidisciplinary ethos and a mandate to incorporate social concerns.

In this Special Collection, authors from across the globe articulate some specific social work contributions in end-of-life care work. Actual potential social work contributions are emphasized, rather than assigned roles that social workers may currently fulfil (or not). This collection therefore aims to point to directions needed for change. These suggested changes take two main forms: changes in approaches to how social work is practiced (and understood by other professionals) and can therefore complement the work of other professionals; and changes to broader policy approaches in end-of-life care.

The lack of clarity of the social work contribution may come about for different reasons. First, social work is a profession based on understanding the interface between people and their environments – physical, social and economic. This means that social work knowledge must range over different disciplines, and also sometimes conflicting approaches to understanding human behaviour. Interdisciplinary understanding is often elusive and complex, especially when the big questions about life are played out in a wide variety of social contexts, and involving many different players. Social workers are equipped to recognize many different perspectives, and to work with often conflicting needs and viewpoints. This complexity can lead to uncertainty on many levels. Indeed, existing research connects poor management of uncertainty in palliative care with negative outcomes for both patients and bereaved families (Dowd and Salama in this collection). Often, deep reflection can mitigate the anxiety associated with the many different tensions experienced at the end of life. Sarah Dowd and Rebecca Salama, using a reflective dialogic method, provide a specific practical approach to help tolerate ambiguity. Given that social workers are required to be highly competent at reflection, the authors identify significant potential for social workers to support individuals in recognizing and engaging with this uncertainty. They offer a framework for how ‘safe uncertainty’ can help frame professional practice and support tolerance with ambiguity in all elements of social work at the end of life.

Second, social workers are in the business of understanding the full and holistic experience of the people they engage with. What is often far from clear at the end of life is the full meaning of the experience for the person dying and for their loved ones. The essence of a social work approach is in ‘starting where the person is at’, which implies a stance of deep and respectful listening. There is significant skill involved in understanding where people are at and disentangling this from what people believe they ought to think and feel because of social obligations or norms. Fiona Gardner’s article outlines an approach of critical spirituality, which focuses on the need to make personalized meaning of the full experience at the end of life. She recognizes how personal experience can be mitigated by societal assumptions which might influence the way a person understands their own experience. Being aware of the impact of these can provide a helpful basis for creating one’s own meaning at the end of life. Gardner demonstrates how critical spirituality can be actively incorporated into practice so that social workers can help individuals and families understand the impact of societal assumptions and recognize their own internalized beliefs, in an effort to enhance life for those in palliative care. While the inclusion of critical spirituality requires a cultural shift, it offers significant potential for nurturing attention to interconnectedness and transcendence at the end of life.

Recognizing the full experience (especially of groups often seen as marginal) of the people social workers work with is illustrated nicely by Arieli et al. in Israel. A common focus for social workers is therefore how an appreciation of the full experience of marginalized people can and should lead to policy change. They explore the experiences of live in migrants who care for people at the end of life. Social workers in Israel have a mandate to monitor the well-being of live in carers as well as recipients.

The authors identify themes of devotion and responsibility, loneliness and fear, and trauma and disenfranchised grief. Given that uncertainty and insecurity about their work/visa status magnifies the impact of the grief experienced by end-of-life caregivers, the authors call for increased awareness and action to address the contributions of migrant homecare workers and transform oppressive systems.

Third, despite the call for interdisciplinarity, social work does not always occupy an integral or even high status position within a medical- or health-oriented team (Wartchow et al.). This can lead to the social work contribution not being clearly articulated and viewed as ‘on call’ rather than as a core component. Wartchow et al. illustrate this through a qualitative study of health care personnel in Germany. They conclude by pointing up the contribution of social workers particularly with psychosocial and socio-legal issues.

Lastly, a multidisciplinary perspective may be difficult to articulate clearly, given that some disciplines may hold contradictory viewpoints. There is therefore a strong need to spell out the contributions of different professions. Agren and Holmberg show how, despite the ‘taken for granted ideal’ of interdisciplinary teams in palliative care in Sweden, the organization of teams and contributions of different professions is often not addressed. In particular, they identify practices that stray from such intention and illustrate variations in access to support provided by a social worker. Policy documents position social workers as natural members of the palliative care team, but do not explicitly address social work expertise.

Ellen Csikai and Karen Bullock’s article acts as a competent summary of the social work approach. Their history of palliative care social work in the United States traces the contribution of social work in three main arenas: attention to psychological and social needs; advocacy for the marginalized; and the provision of holistic, interdisciplinary care. Attention to psychological and social needs as well as interdisciplinary care have already been addressed in this editorial. In some ways though, advocacy for the marginalized speaks to one of most important social work values, that of social justice, and the commitment to equity as a long-standing tradition in social work. Offering leadership in addressing inequities is an important and fundamental social work contribution. The authors illustrate the import and impacts of social work education, training and leadership development in palliative and end-of-life care over the past 30 years. Given that social workers are situated as ‘ethical professionals and leaders in education, research, and clinical practice’, there is a call to continue the momentum, dismantle barriers to care and innovate as change agents.

We invite readers to join with social work colleagues in end-of-life care to reflect and act upon the challenges showcased in this special collection.