The intentional pursuit of everyday life while dying: A longitudinal exploration of occupational engagement for working-aged adults living with advanced cancer

People living with advanced cancer want to participate in everyday activities that give their life meaning for as long as possible. This desire remains a priority despite increasing dependence and cancer progression. Importantly, the loss of the ability to participate in valued activities can have detrimental consequences on a person’s sense of self and well-being. In Canada, 84.9% of people choosing medical assistance in dying define their intolerable suffering as the inability to participate in valued activities. In the past five years since it was legalised, the number of people choosing to end their life this way has increased more than sevenfold. Despite this, a paucity of research describes how working-aged adults living with advanced cancer adjust to challenges in doing activities that are important to them in the time they have remaining.

This prospective study is the first to explore the lived experience of occupational engagement for working-aged adults living with advanced cancer and examine how participation in everyday activities changed over time as their disease progressed. A pragmatic qualitative approach informed the design of this longitudinal, hermeneutic phenomenological study. Eight working-aged adults between the ages of 40 and 64 participated in multiple semi-structured, in-depth interviews in their own homes over a span of 19 months. Findings were mapped against the Model of Human Occupation and illness experience literature.

This study found that the lived experience of everyday life for working-aged adults living with advanced cancer was one of increasing dependency, unremitting change, and loss. Losses occurred in the domains of time, space, body, and relationships. Despite these challenges, participants sought to intentionally engage in meaningful occupations. They concentrated on doing things they enjoyed within the context of their environment and valued relationships, prioritising activities that facilitated their goals irrespective of cancer progression. Maintaining the roles of worker and parent were of particular importance for this cohort. Occupational adaptation occurred through continued engagement in everyday activities, facilitating a sense of occupational identity as function declined. The person’s volition (values, interests, personal causation) was the motivator for occupational adaptation in order to continue engaging in valued occupations. A unique finding of this study is its explication of occupational adaptation when competency is not a stable construct, furthering the Model of Human Occupation’s existing conceptualisation of this phenomenon. Participants’ narratives revealed a dynamic relationship between occupational adaptation, volition, and occupational identity. Findings identified that it is the meaning behind activities that motivates the person to intentionally pursue their valued activities.

Optimal care for adults living with advanced cancer should ensure access to opportunities to facilitate continued occupational engagement amid increasing dependence. This thesis contends that the motivation behind occupational engagement plays a central role in occupational adaptation whilst contending with cancer progression. Intentionally engaging in meaningful occupations is a key component of maintaining a sense of self and meaning at the end of life for working-aged adults living with advanced cancer.