Abstract
Humans are innately relational, creative and spiritual beings. We seek meaning and growth within and through our lived experiences – a continuous growth process of being, doing and becoming. Spiritual wellbeing and perceived quality of life are inextricably linked to the fulfillment of aligning to our values – of living meaningfully. Despite scientific advances in healthcare prolonging life expectancy, we all remain mortal with a finite time on this earth. In the face of death, the human desire to live meaningfully does not diminish. It tends to clarify and intensify.
Palliative Care shifts healthcare focus from quantity of life, to optimising quality of life for individuals diagnosed with a terminal illness. While supporting continued meaningful living is one of its aims, pragmatic and contextual complexities and constraints of the acute hospital environment limit options. This emergent, participatory, arts-based research of mixed-methodology, is the first of its kind to explore how therapeutic engagement in multi-modal arts contributes to the well-being and quality of lived experience of individuals who live out their final months, weeks, days, within an acute palliative care unit.
A series of individualised arts-based therapy sessions were offered to palliative inpatients of an acute hospital. Participants were of varied backgrounds, diagnoses, and symptom burden. Focus of sessions was on being and doing creatively together (with OT/AT as co-participant and situated researcher), to explore what mattered most for them at the time. Synthesis and analysis of data gave rise to two distinct parts of the fabric of findings – threads contributing to the ‘how’ of facilitating engagement in therapeutic arts and arts-based research in this context, and those comprising the ‘what’ of process and content of greatest importance for participants’ experiences and outcomes.
Themes crucial to the therapeutic process were: Exquisite human connectedness – Love; Dynamic Intersubjectivity, Non-Linear Emergence; Arts for Discovering & Creating Knowings; and Transcendent & Transformative Possibility. Participant findings pointed to the importance of experiencing an enhanced sense of meaningful connectedness to creative, personal, relational, environmental and spiritual aspects of their life and death, perceived to matter most. Severity of distressing symptoms reduced after sessions, while energy levels consistently increased. Measures of quality of life and spiritual wellbeing improved for all following participation. Creative works often became legacy pieces, gifted to loved ones and/or shared at funeral services at participants’ requests. All finished the program with a new or rekindled desire to engage in creative activities in their remaining time and emphatically agreed that participation should be offered to others.
The novel, pragmatic and translatable insights that arose through this work speak to how incorporating arts-based therapy within acute palliative units improves quality of care, experiences and outcomes. Embracing the therapeutic value of ‘being, doing and becoming creatively with’, complements and enhances responsiveness of current practice. Participatory multimodal arts hold promise of offering accessible, sensitive and safe means to understanding and reflexively meeting complex needs of the palliative inpatients. Shared creativity empowers individuals to continue making value-aligned choices, to engage meaningfully in their life in connection to what matters most to them, despite the constraints of the hospital environment. It contributes to optimising a sense of psychospiritual wellbeing, dignity, legacy and peace that optimise quality of life and support a ‘good death’ when the time comes.