The recent pandemic has highlighted the importance of letting patients, relatives and healthcare professionals alike, share their stories on the impact COVID-19 has had on death and dying across palliative care. Loneliness is a complex construct, which incorporates or overlaps with other similar concepts such as social isolation. Loneliness, social isolation and being alone are often viewed and treated as the same construct; yet, there are quite a few distinct differences, especially in how they may impact those experiencing them. For example, the first two are often used interchangeably in everyday language, thereby distorting any distinction between them. We should understand the difference between loneliness and social isolation to ensure any interventions are tailored appropriately to help people manage their lives better.
Social isolation arises from a situation where there is minimal or total absence of other people to interact with (Tzouvara et al, 2015); therefore, it is an objective state as it is often outside our control. One solution is to ensure patients have someone with them most of the time, whether this be at home or within our institutions. On the other hand, being alone can be out of choice (men in the shed syndrome) and therefore, a controllable preference where one is conscious of it and may not always feel lonely. It can enhance one's sense of well-being; hence, carers need to appreciate this dynamic as well.
Loneliness is more complex and is a subjective state — it is internalised first and later manifests as psychological distress (Youell and Ward, 2016). Individuals experience the discomfort of not having someone or other people to interact with. The other crucial point here is that some people may still feel lonely in the presence of others for the simple reason that they may not feel understood. For example, when patients feel that: healthcare professionals (HCPs) fail to understand their situation; or the impact of long-COVID; or shortness of breath; or their existential fear about impending death. One way to ensure patients feel heard is allowing them to tell their stories so that we fully understand the context and implications of their life-world (situation). Beach and Bamford (2014) reported that males were more prone to loneliness than females, with around 1.2 million men aged over 50 years (14%) experiencing a moderate to high degree of social isolation first. The report went on to state that nearly 4.2 million men over 50 years (48%) experienced some degree of loneliness, and this age group also frequently accessed palliative care services. This finding may mean that additional resources are needed to first understand these men, and then offer targeted support to tell their stories. Generally, storytelling has the potential to preserve self-identity (Youell and Ward, 2016), and provides confidence with options to connect effectively with others.
Self-identity comes from feelings of being valued and being worthy—first as a person, then as a patient. The process of storytelling affords the teller a sense of autonomy and control of what they share. While this process could have its own problems (e.g. inability to articulate themselves), the ultimate goal is to support patients to express and share their experiences with a view to emotionally self-cleanse, while fostering a sense of togetherness with HCPs who are listening. It is therefore important that listening becomes a central element of this process, even where issues of articulation are apparent and accompanied with encouragement to the patient to keep telling their story.
With such benefits of storytelling (only a few mentioned here), it should give those of us in palliative nursing the courage to facilitate it among all patients we care for, including those in the community.