Findings of the studies in this review suggest that arts engagement can elicit a highly individualized, substantive, and positive experience among patients living with life-limiting illness. Findings also suggest that there are challenges that arise in practice requiring further attention to skills and proficiencies requisite of navigating palliative care needs to facilitate safe, effective, and meaningful arts engagement. Among the eight studies reviewed, study subjects were predominantly adult patients, though family members, health professionals, and staff, or artists or facilitators were included in two studies each.[19,51] It was notable that only one study included pediatric patients in the sample. Nuances of arts engagement with pediatric patients as compared to adults certainly will benefit from further study. The literary arts were the most prevalent discipline represented in the interventions, followed by visual arts and music. Dance, playwriting, and theatre performance were underrepresented, having been included in only one study each.
Primary themes reported in these studies reinforce existing evidence in the field of arts in health. Themes such as arts engagement promoting a sense of well-being, an enhanced sense of self, and connection with others to uniquely facilitate meaning-making, discovery, reflection, and expression are well documented in the broader literature.[10,14-18] Hence, it could be argued that arts engagement addresses primary aims of palliative care such as to offer opportunities for patients to review and embody the question “what gives your life meaning?” and to provide social support for patients and family members.[23-26]
In keeping with the ethos of palliative care, patients and artists alike benefit from artists’ inclusion on the interdisciplinary team. Several of the reviewed studies highlighted the necessity of artist collaboration with the healthcare team.[19,20,48,51,53] Health professionals’ interactions with artists included referring patients to an arts program, informing artists’ of relevant patient health status, and assisting the patient with coming and going from an art workshop. Artists are noted, by a staff member in one study, to have provided “enriching and enormously positive” experiences for patients, which “enhanced communication”. The “confidence” and “non-threatening” approach exuded by the artist is also noted. This observation raises the question of how the arts could become more integrated into the delivery of palliative care services, perhaps in a manner that improves quality of care and provides respite and support for the team. In light of the World Health Organization's call to consider palliative care as a public health issue and for earlier integration across health care systems, further discussion is warranted as to how expertise within the arts might be engaged in collaboration with the palliative care team.[21-22]
In the only mixed-methods study included in this review, arts engagement was incorporated into palliative care as a means of nonpharmacological symptom management. Researchers reported significant physiological impacts of live music such as decreases in pain, anxiety, nausea, shortness of breath, and feelings of depression along with a significant increase in feelings of well-being. Investigators also noted that opioid use decreased in experimental participants in the period following the music intervention as compared to the control among participants who did not elect to participate in music. A mixed-methods approach bears further exploration, given the emphasis in palliative care on providing nonpharmacological treatments for symptom management. This same study introduced that it was a challenge to isolate variables, for example, determining the benefits of live music versus the presence of a musician.
Findings of the reviewed studies also highlighted specific challenges and opportunities related to facilitating the arts in palliative care. In order to safely and effectively navigate alongside patients who are experiencing difficult-to-manage physical symptoms, social stigma, and social isolation, as introduced in these studies, artists require working knowledge of the health care context.[45,48,49,54] Given the impacts of the current pandemic, the implications of social isolation whilst living with a life-limiting illness are even more pronounced than in the past.[55-57] The pandemic has introduced a new layer of stress and a role for artists who can safely facilitate virtual arts engagement bears consideration[58-59]. Artists working in health care and public health are innovating in facilitating the arts through remote delivery and this work may have significant implications for palliative and EOL care.
Sinding and co-authors’ description of creating a theatre performance with women with breast cancer alongside Kennett’s description of a collaborative art exhibition both revealed that specific considerations are critical to implementing public-facing work in safe and effective ways and that these programs may also offer unique benefits when implemented within scope. Pommeret and colleagues also presented patient- and practice-related difficulties encountered during and following live music with patients. Patient difficulties included fatigue, a loss of sense of autonomy, and references to death or dying following the live music intervention. Authors also identified professional practice-related challenges such as song selection that are worth exploring further. These findings present a critical opportunity to shape future recommendations regarding preparation for practice and to guide a research agenda.
A strength of this review was the use of an integrative design, which allowed for a thorough and systematic search through a broad body of literature, including experimental and nonexperimental studies to synthesize a wide array of evidence. Thus, few high-quality, well-defined studies exist from which to draw meaningful comparisons or reliable conclusions about the benefits and risks of arts engagement. Peer-reviewed articles were sparse regarding artists’ professional work engaging the arts with patients in palliative and EOL care. Standards and formalization of such context-specific practice were not identified. Whilst common themes emerged across the articles included in this review, one finding is a need for well-designed studies with fastidious and consistent reporting of protocols, samples, and interventions that can be compared across studies and replicated. From such studies, evidence-based practices can be established and professional standards created to meet the unique needs of patients in palliative care. Steps can then be taken at a policy-level to adopt and implement these standards to benefit patients, artists, and the health care organizations within which they serve.
Recommendations for Future Research and Practice
Based on the present review of the eight studies that met inclusion criteria, the following recommendations are made to further efforts to understand how to maximize the benefits, minimize the risks and address the challenges of these practices. The present review reveals a lack of consistency in reporting among extant studies on arts engagement. Consistency in reporting advances reproducibility and generalizability allowing for a more robust synthesis of findings. Future studies on arts engagement in palliative care would therefore benefit from the consistent use of outcome measures, reporting guidelines, and terminology for search terms and keywords, for example. An outcomes measure included in this review was the Edmonton Symptom Assessment Scale (ESAS) however the Warwick-Edinburgh Mental Well-being Scale (WEMWS), the General Self-Efficacy Scale, or the Health-Related Quality of Life (HRQoL) are also frequently used in arts in health research.[10,13,29] Reporting of protocols should transparently describe the roles, scope, and responsibilities of each team member, especially those implementing the intervention. Reporting should include theoretical or conceptual framework, role descriptions, training and orientation to palliative or other health care context, artist compensation, team structures, and intervention descriptors. Transparency in reporting will further efforts to advance understanding of arts engagement with patients in palliative care. In an effort to index future studies, the corresponding author has proposed the umbrella term “arts in health” with sub-terms “music in health”, “dance in health”, “visual art in health”, and “literary arts in health” as MeSH terms in the National Library of Medicine.
Notably, the review findings include patients’ perceptions of engagement with artists as a primary measure. It is clear in this limited sample that there is perceived value of the arts to enhance quality of life and to complement the social and existential aims of palliative care. It would be constructive to include family members and clinician perspectives, as they are included in only one study. Whilst clinicians focus broadly on physical care and comfort, the arts amplify holistic aspects of care and therefore, align with and fulfill the broader aims of palliative care.
Further research is also needed to understand benefits, risks, and challenges unique to each of the art forms, and especially dance and drama, in palliative care, which are underrepresented in the literature to date. Consistency in the use and reporting of protocols, outcome measures, and terminologies across studies exploring each art form will again be helpful in this effort. In addition, future research efforts should aim to expand understanding of arts engagement with pediatric patients in palliative care.[4,26] Such studies would benefit from collaboration with interprofessional health team members such as Child Life specialists and creative arts therapists.
Whilst the goal of the present review was to maintain a narrow focus on artists’ delivery of the arts with individuals with life-limiting illness, it bears consideration that a range of clinicians including creative arts therapists have expertise and investment in arts engagement as clinical care. Interdisciplinary collaboration, therefore, is key. A future literature review synthesizing studies that shed light on arts engagement delivered by clinicians as part of clinical care would thus offer useful insights. One study, for example, introduced an arts program in hospice featuring artists and creative arts therapists working cooperatively. An interdisciplinary and collaborative model such as this is worth exploring further.
Some studies explored arts engagement provided by allied health professionals, the use of the arts in nursing or medical education, or to enhance the clinical care environment. Each of these topics is worth examining in its own right. Examples included the work of chaplains or occupational therapists (OTs) with patients in palliative care settings.[61-66] Activities that incorporate creative elements such as “legacy projects”, “life reviews”, and “illness narratives” notably share some common elements with the review topic. For example, arts engagement complements an occupational therapy aim such as “creative occupation” or a chaplaincy aim of “meaning construction’.[62,65-66] Studies authored by allied health professionals using arts engagement in their work with patients in palliative care should be aggregated and reviewed to reveal knowledge and proficiencies that might complement existing services in palliative care. Studies examining the role of the arts to enhance nursing or medical education,[67-68] to prevent health care provider burnout,[69-70] or to enhance the design in the environment of care were not included in this review as they do not feature arts engagement with patients, yet such activities bear exploration in an effort to map the range and reach of the arts in palliative and EOL care.
Additional consideration is recommended for patient populations with specialized needs.
It is recognized that by excluding clusters of conditions such as dementia, studies describing artists’ work in dementia care were not outlined. However, due to the nuanced aspects of dementia care, the authors of the present review recommend that this area is explored separately to account for the practical considerations specific to changes in cognitive functioning.[73-75] Similarly, dance programs for Parkinson’s disease require highly nuanced practice and are well-structured and mapped in the literature.[76-80] Therefore, it is recommended that a research agenda is mapped for arts engagement for each patient population identified as having specialized needs to identify outcome measures best suited to assess benefits and risks.
Finally, in a few studies not included in the present review, researchers engaged expressive writing (EW) with women with metastatic breast cancer. These studies introduced feasibility issues with intervention delivery, adherence, and follow up, which are instructive for the present review topic.[81-83] While ease of recruitment indicated patient interest in an arts-based intervention, adherence was low and patients reported distress immediately following the intervention. In one instance, patients had a significant increase in the use of mental health services following the intervention. EW in these studies was introduced and facilitated by a research nurse or assistant, and the reported feasibility issues may demonstrate the value of an artists’ expertise in facilitation. Given the vulnerability of patients with life-limiting diagnoses and challenging symptoms, researchers in future studies should carefully consider design, methods, and protocols for safe and effective delivery of arts interventions.