The Palliative Arts: Envisioning a New Paradigm in Palliative Care

Abstract

A growing body of evidence supports the effectiveness of arts-based interventions in nurturing human connection, healing, and reflection—for patients living with illness, their families, and their health care communities. Thus, we propose that these interventions, what we call the Palliative Arts—just as much as science—should be systematically integrated in clinical education, practice, research, wellness, leadership, and advocacy to impact person-centered outcomes. Our interprofessional team describes a variety of arts-based programming that its authors are leading to highlight the breadth of existing Palliative Arts work and point to future horizons for its integration in health care education and clinical settings. We propose that the Palliative Arts can inform a new paradigm, one with the potential to foster person-centered innovation and meaningful change in the field of palliative care—and health care at large.

Introduction

The field of palliative care is at an inflection point. A specialty with a foundation built on Anglo roots, the standards, and technical approaches to our work need reconsideration, dismantling, and reconstruction. Inequity in the provision of health care and escalating rates of provider burnout and attrition heighten the call for a new paradigm—one that improves access to, and quality of, palliative care for diverse patients, families, communities, and health care teams. Systematic integration of the arts in palliative care is one promising way forward.

The arts—and the narratives at their heart—help clinicians connect on a deeper level with their patients, communities, and themselves: to address uncertainty, wrestle with big ideas, process complexity, engage with diverse voices, communicate with sensitivity, and find meaning in their clinical work. Arts-based modalities include improvisational theater, narrative medicine, narrative therapy, music, and visual art—as well as expressive arts practiced by trained specialists, such as art therapy and music therapy.

A growing body of evidence supports the effectiveness of arts-based interventions in nurturing human connection, healing, and reflection—for patients living with illness, their families, and their health care communities. Thus, we propose that these interventions, what we call the Palliative Arts—just as much as science—should be systematically integrated in clinical education, practice, research, wellness, leadership, and advocacy to impact person-centered outcomes. Our interprofessional team of authors describes a variety of arts-based programming that its members have integrated in their respective institutions. Our aims are to highlight the breadth of existing Palliative Arts work, based on our experiences, and point to future horizons for its further integration in health care education and clinical settings.

Leadership and Advocacy

Centering palliative arts on diverse lived experiences

As we strive toward greater health equity within our nation, we must consider what populations have been historically disadvantaged in terms of health care access and quality. Evidence suggests that racially minoritized groups may have less access to palliative care and are less likely to enroll in hospice services.^1,2 In turn, palliative care interventions that are uniquely designed to meet the needs of marginalized groups may ultimately lead to improved outcomes in quality of life, patient and family satisfaction, and greater alignment between goals of care (GOC) and executed medical care plans.

We cannot underestimate the power of storytelling and the arts, be it in the spoken, written, or visual form, in sharing the experiences of diverse populations and advocating for more effective solutions to address varied needs. The health care landscape offers multiple examples of how sharing patient stories through photography and digital storytelling can help center the experiences of patients receiving palliative care or approaching the end of life and, in turn, be leveraged to improve policy.³ The arts can be leveraged to educate leaders of health care and the government, as well as the general public, about the role of structural barriers and interpersonal dynamics that can contribute to discrimination in health care and, ultimately, to effect policy changes.

The tenets of improv theater as outlined below are additionally being applied to create forums for engagement around implicit bias education.⁴ This artform creates an opportunity to investigate the ways in which we approach partnerships, the assumptions we may make of the experience of another based on our own implicit biases, and the avenues through which we can continually engage with and dismantle such internal and external structures. Engaging in arts-based initiatives such as these, through the lens of palliative care, provides a forum to inhabit and explore the biases held, witnessed, and experienced in health care systems.

Narrative-Based Education

3-Act Model conversation training

Developed by physician Rita Charon, narrative medicine aims to teach clinicians how to apply skills they gain through analyzing literature to their work with patients and families.⁵ Narrative medicine is based on the competencies of attention, representation, and affiliation, which are taught through the narrative practices of close reading, reflective writing, and sharing.⁶ Based on this foundation, a variety of narrative-based educational offerings have been developed within palliative care.

The 3-Act Model is a narrative approach to goals of care (GOC) conversations developed by Wu and colleagues in the Johns Hopkins Bayview Palliative Care Program. The model is highly adaptive and grounded in the patient’s unique story. Teachers use literature to help train narrative GOC conversation skills, as well as original role-play scenarios and a novel rubric congruent with the 3-Act Model for assessment. The educational sessions include best practices for skills training: didactics, video demonstrations, and practice with formative feedback by trainers. Training has resulted in learner proficiency by objective assessment in classroom, virtual, and hospital settings.^7–10

Since 2018, the 3-Act Model has been sustainably integrated in several Johns Hopkins training programs and key units beyond palliative care, reaching 40 physicians per year and many more other interprofessional team members. For example, one project in the medical intensive care unit included 3-Act Model training for all clinical Pulmonary Critical Care Medicine fellows merged with the design of novel workflows, which included designating the fellows to lead GOC discussions and empowering nurse champions. In addition to fellows’ demonstrated communication proficiency, a pre- versus postintervention retrospective study showed a five-fold increase in documented GOC conversations and a three-fold increase in palliative care consults despite the challenges of the COVID-19 pandemic.⁹ Ongoing work includes tailoring the 3-Act Model by—and for—our Black community via experience-based codesign (EBCD), discussed below.

Narrative arts in palliative care pharmacy education

Narrative arts are an integral component of the University of Iowa College of Pharmacy Palliative Care Certificate for PharmD students. Across 16 credit hours of coursework, students intentionally engage with a wide variety of narrative arts including reflective and creative writing, readings, film, music, video games, and virtual reality. This includes students reading an excerpt from Nina Riggs’ memoir The Bright Hour, viewing the documentaries Homegoings and Life Before Death, and playing the video game That Dragon Cancer. Additionally, since 2020, students experience illness through patients’ perspectives using Embodied Labs’ virtual reality platform.

The curriculum centers on patient and caregiver stories, as well as those of health care providers who care for patients with serious illness.¹¹ In addition to reading published stories of health care providers’ experiences, students hear experiences from an interprofessional palliative care team, including a chaplain, music therapist, nurse, nurse practitioner, pharmacist, physician, and social worker. Students also explore engaging in narrative arts as a self-care strategy. Due to student interest in hearing more from music therapists and learning more about music therapy and music as a tool for self-care, the palliative care music therapist facilitates workshops with students to explore how they do and can integrate music in their life for meaning-making in their professional and personal experiences. Workshop activities include developing a therapeutic playlist, reflecting on their healthy and unhealthy uses of music using the Healthy-Unhealthy Uses of Music Scale, and playing musical instruments together. Students also explore journaling using the Three-Minute Mental Makeover and reading and writing nonfiction prose and poetry.¹² Outside of class, students are encouraged to attend the University of Iowa Examined Life Conference, which explores the intersection of medicine and the arts, as well as attend writing events in Iowa City, a UNESCO City of Literature.

In a mixed methods study exploring perceived value of the palliative care certificate among the first two graduating cohorts, major themes about participants’ perceived value of the palliative care certificate curriculum included gaining a holistic, humanistic perspective for patient care, attainment of skills to care for patients with complex needs, growth of emotional intelligence, increased resilience and strategies for emotional self-care, and development of skills to navigate personal loss.¹³ While additional research is needed to identify the most impactful components of the program, we posit that the narrative arts components of the program, versus the pharmacotherapy components, are essential to achieving most of these program outcomes.

Narrative medicine workshops for practicing clinicians

At Saint Louis University, narrative medicine workshops for practicing clinicians have proven useful and effective. In a 3-hour continuing education program, Wallace and colleagues found that a narrative medicine intervention improved clinicians’ skills for active listening, eliciting stories, and improving their understanding of how personal experiences shape professional practice.¹⁴ Wallace’s team developed the workshop following a survey of providers that found numerous connections between professionals’ histories of loss, personal practices of advance care planning, and their professional practices in end-of-life (EOL) care communications.^15,16 Given these connections along with the real and perceived difficulties clinicians report in engaging in EOL care conversations, the goals of the narrative medicine intervention were to (1) develop skills in attending and responding to stories of others and (2) reflect on their own stories of loss related to their professional practice.¹⁴

In an extended workshop design providing 6 hours of continuing education, participants reported that the skills they learned were useful to their practice and will help them talk more effectively with patients near the end of life.¹⁴ Participants also had significantly improved scores from baseline to 2 months postworkshop on instruments measuring patient- and family-centered communication and effective EOL care delivery and in ratings of advance care planning self-efficacy.¹⁴

One critique of narrative medicine is that some people, by acculturation or by nature, may be inclined to engage within narrative spaces more than others—making narrative practice not universally helpful.¹⁷ While Wallace and team commented on and noticed varying degrees of narrative abilities by participants in conducted workshops, they did not see abject resistance or reports that the workshop was not helpful among less narrative-minded participants.¹⁴

Improvisational theater for deepened relational learning

Improvisational theater (“improv”) is a type of performative art wherein the performance is cocreated live and in the moment, without the use of a prewritten script. Improv at its heart relies on trusted partnerships, open listening, and the ability to remain creatively flexible.

Medical improv has been utilized to engage health care clinicians from an educational perspective that reconsiders how communication and partnership are taught.^18–20 With consideration through a palliative care lens, improv education teaches the concept of relational health care, wherein patient, family, community, and clinician can cocreate a culturally sound and connected plan of care. Education exploring the tenets of improv—such as “yes and,” “accepting the gifts that are given,” and “being with uncertainty”—through discussion and engagement within improv exercises has the potential to improve how communication education is delivered to interprofessional groups.^21,22

At Children’s Hospital Los Angeles, improv education and narrative medicine have been combined to create interprofessional “Narrative Improv” educational forums by Rusch and colleagues Dr. Gitanjli (Tanya) Arora and Dr. Chris Adrian.⁴ Engagement in narrative medicine techniques and reflection provide the foundation for deep engagement in improv exercises that explore the intersection of partnership, humanity, and working with those facing serious illness. Early investigation of this education is illuminating gaps in how complex communication is taught and supported within a sustainable practice. How do we go beyond teaching communication techniques via lecture or role-play toward models that invite safe exploration into inhabiting relational health care within our bodies, hearts, and minds?

Narrative Improv may help answer this question. Utilizing the tenets of improv theater, we can begin to take education practices beyond didactic settings and create opportunities for clinicians to expand and deepen their clinical practice outside of the clinical encounter.⁴ This additionally creates opportunity for community building and self-connection within otherwise disparate systems of health care.

Clinical Practice and Research

Person-centered narrative interventions

Integrating patient narratives into the electronic health record (EHR)—a primary mode of communicating patient information to clinicians—provides an opportunity to more fully incorporate cultural values, beliefs, and preferences into patient care,^23–26 improve patient-clinician communication,^23–30 and improve patients’ well-being (a state that is more than just physical health).^31–33 Currently, there is a lack of research about how to effectively integrate patient narratives into the EHR.

Person-centered narrative interventions (PCNIs) can fill this knowledge gap and thus help clinicians develop tailored, person-centered palliative care.^31–33 The PCNI research team has conducted three PCNI studies in the University of Colorado Health system. In the first feasibility study, a person-centered narrative was cocreated between an interviewer (using a guide) and an interviewee (patient) living with cancer.²⁹ After patient approval, the narrative was uploaded into their EHR. This PCNI proved feasible (55% enrollment rate) and acceptable (100%) for 20 hospitalized patient participants and acceptable (100%) and usable by their clinicians.

The second feasibility study employed a virtually delivered protocol in an outpatient palliative care clinic embedded in a National Cancer Institute-designated cancer center.^34,35 Although e-mail recruitment was noted to be a challenge, the postenrollment intervention completion rate was 95% (n = 19), and high rates of follow-up data were obtained longitudinally for the enrollees, supporting feasibility. Both studies offer examples of how the PCNI provided opportunities for more person-centered care, including (1) the health care team started addressing the patient by their preferred name; (2) the narrative was read during an ethics consult meeting, portraying the patient as a “person” to aid the ethics assessment; and (3) a nurse scheduled a spiritual care consult for a patient whose narrative reflected spirituality as an important value.^34,35

The 3-year pilot randomized controlled trial was designed to test the feasibility of data collection in an acute care setting and provide preliminary efficacy for the PCNI, relative to usual care, on patient-reported quality of communication (QOC) and biopsychosocial-spiritual well-being.³⁰ The study provided evidence of feasibility, acceptability, and early efficacy (proof-of-concept). Study enrollment rates, consistent with prior feasibility studies, demonstrated both patient and clinician acceptability of the intervention. Importantly, collecting patient-reported outcomes measures at several time points in the acute care setting has also proven feasible in both intervention and control arms.

Preliminary efficacy analyses show intervention impact on the outcome of patient-reported QOC. Patients in the intervention group were also more likely to report feeling “heard and understood” at follow-up relative to those in the usual care group.³⁰ Patients who had higher QOC and reported feeling heard and understood also had lower anxiety and depression. These findings provide the impetus to continue the evaluation and optimization for the integration of PCNI into health care delivery to bridge a more traditional biomedical clinical system with a more holistic approach to the cultural, social, and spiritual needs of persons (patients) needing care.

Dignity therapy

Dignity therapy (DT) is a well-known framework that guides a patient through a personhood affirming interview while drawing out the individual’s story, promoting generativity, and expressing the patient’s dignity through their own words and memories.³⁶ One deliverable of DT is a legacy document that communicates the person’s needs, goals, and values.^37,38 Although it was originally used for patients with cancer and terminal illness,³⁶ DT has now been implemented across populations and settings with promising outcomes (e.g., family caregivers, chronic obstructive pulmonary disease, and motor neuron disease) across 11 countries over two decades.^39–48 DT helps interprofessional clinicians attend to the existential issues that often emerge in serious illness and foster meaning and purpose to alleviate suffering.^36,41,44,49

Lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ+) patients and their chosen families experience well-documented barriers to dignified palliative and EOL care (e.g., homophobia, transphobia, stigma, bias, discrimination, violence, disenfranchised grief, unwanted questioning, forced disclosure of identity, criminalization, and exclusion of chosen families in decision-making and care planning).^50–55 There is a clear opportunity to provide increased dignity and person-centered care to LGBTQ+ patients and chosen families in these contexts. However, no applications of DT specific to the LGBTQ+ setting at EOL exist.

In partnership with The Good Listening Project (TGLP)⁵⁶—a group of Listener Poets who “hold space for people in health care communities to share whatever is on their mind… [and] write each person a custom poem”—a nurse-led open trial of a poetic DT adaptation is being conducted for LGBTQ+ adults receiving hospice care. Funded by The Rita and Alex Hillman Foundation, the project includes questions integrated into the traditional DT interview guide inquiring about LGBTQ+ identity and its relationship to meaning, purpose, legacy, and sense of self at EOL. Rather than an interview transcript, as per traditional DT, the patient and family will receive a narrative poem customized by TGLP as a generativity document. The study will measure such outcomes as feasibility, acceptability, and patient and caregiver satisfaction with the poetic intervention. The opportunity to analyze both DT transcripts using thematic analysis and the TGLP poems using poetic analysis will also be leveraged,^56–58 allowing the research team a chance to compare themes identified in both the DT interviews (e.g., patient’s own words) and the TGLP poems (e.g., aesthetic interpretation). The study team’s hope is that this narrative approach to DT will elicit additional data on personhood and help identify additional opportunities for healing at EOL for both patients and their chosen families, promoting inclusion, equity, and dignity in the process.

Experience-based codesign

EBCD is a form of participatory action research with a narrative-based and iterative approach in six stages.⁵⁹ Specifically, EBCD uses qualitative, narrative methods to gather experiences from staff, as well as patients and their family caregivers or partners (stages 2 and 3). Inclusion of both perspectives is important for codesign in palliative care research, as staff often overlook key areas of significance in care that are important to patients and families, whereas patients and families may be unaware of system limitations, challenges, and requirements governing staff practice.⁶⁰ Once the two groups have shared their stories, the data are analyzed, with integration of ongoing collaboration in the interpretation and validation of findings to draw out “touchpoints” (the defining moments that make or break an experience). Participants then partner to collaboratively prioritize touchpoints that reflect the shared needs and experiences of staff and patients and families (stage 4). Design science methods are then applied to facilitate the cocreation of strategies to improve care experiences centered around these shared touchpoints (stage 5).^59–61 The conclusion of the work in stage 6 with a celebration event serves as an act of reciprocity and thanks to all for their involvement, a cathartic conclusion, and/or an opportunity to foster ongoing partnerships.

The conduct of palliative research is notoriously challenging due to such factors as the unpredictable and potentially unstable conditions of participants over time and a tendency toward paternalistic gatekeeping.⁶² EBCD has seen growing use in palliative care research because its focus on narrative and tailoring care, as well as its flexible and inclusive features, can help mitigate some of these challenges.⁶³ EBCD uses narratives from staff, patients, and families to generate reflection. For example, narratives may be captured using filmed interviews, and key quotes (with permission from participants) are selected and built into an experience film; the film can then serve as a catalyst for discussion. Of note, study participants can enter and leave the study across stages per their preference, and they maintain control of their narratives and data across the study, including how they are represented at dissemination and application of service improvement activities.⁵⁹ In many instances, participants can be given copies of their own film or the final catalyst film, building reciprocity—as well as a legacy document—which can be deeply impactful for family members if the patient participants do not survive the duration of the research study.⁶⁴

Beyond the impact of the EBCD process, the methodology is an inherently inclusive one that encourages and builds codesign communities. Research conducted by authors Wright and Wu has shown the potential for the approach to be used to improve equity and inclusion in palliative care across intersections of race, ethnicity, and ability. The use of narratives, film, and codesign means that evidence generated through this approach is inherently trustworthy in that it is provided by and validated with the patients, families, and staff who are at the heart of care provision. EBCD offers a powerful, cyclical mechanism to form partnerships with our communities, collaboratively turning their experiences into narratives, narratives into evidence, evidence into strategies, and strategies into action that will serve to improve future experiences of palliative care delivery.

Clinician Wellness and Sustainability

Poetry and storytelling

For palliative care professionals, the consideration of wellness in our work is paramount. The complex nature of caring for patients with serious illness and the multiple stressors that arise within this context requires palliative care professionals to be intentional in cultivating professional wellness to promote longevity in practice. In turn, we must address structural systems that create and continue unsustainable patterns that promote burnout and ever-increasing attrition.⁶⁵

Palliative care practitioners leverage the healing power of listening regularly in their care of patients and families but may rarely get the opportunity to have a space in which they are listened to. A growing number of initiatives, such as the Palliative Story Exchange, are providing platforms on which clinicians themselves can share their stories and have their experiences of care listened to within a supportive community.⁶⁶ Additionally, both listening to and writing poetry may provide palliative care practitioners with the space and opportunity to reflect on their own lives and to connect their service in health care back to their greater purpose.⁶⁷ The literary arts, including narrative and poetry, have been found to help palliative care professionals cultivate empathy, find meaning, and achieve a deeper sense of community in their work.⁶⁸

As mentioned above, TGLP delivers healing arts programs to health care organizations to help alleviate the stress and burnout affecting people within those systems. Both by listening to health care professionals and writing poetry for those professionals as a tangible reflection of their shared stories, TGLP listening poets—which include trained palliative care practitioners—can contribute to a culture that reinforces the importance of provider well-being. To date, TGLP has provided programming and workshops for six palliative care programs and 300+ palliative care professionals nationally. Testimonies shared by past participants reflect that engaging with poetry through TGLP helps to ease emotional burdens and ultimately empowers them to provide a higher quality of care for their patients and themselves.⁶⁹

Ideally, palliative care programs would systematically integrate such reflective practices into their routine schedules. For example, Johns Hopkins Bayview Palliative Care has implemented a monthly arts-based intervention, dubbed “Thrive by Arts,” in which team members take turns creating and facilitating sessions.³ Examples include sharing favorite songs and the stories behind them; drawing your “inner monster”; and engaging in stories about the diverse community served with the Director of Community Relations. Written comments from the team indicate the power of these sessions to help keep clinicians connected and well.

Partnerships with expressive arts therapists

Growing collaborations with expressive arts specialists—such as art or music therapists—may provide an important path toward wellness and sustainability. Art therapy and music therapy have each shown psychological and physiological benefits in the health care setting, and more research in this direction could expand opportunities for access and integration.⁷⁰ From a palliative care perspective, intentional partnerships with expressive arts clinicians can lead to new and strengthened interventions that support people across the spectrum of serious illness, from treatment to bereavement,^71–74 as well as new opportunities for the mitigation of clinician burnout and attrition.^75,76

Conclusion

Our team of authors has applied the Palliative Arts to education, clinical care, research, interprofessional team wellness, leadership, and advocacy. Narrative and arts-based programming can—and should—inform quality improvement and systems thinking initiatives, such that an impact on meaningful outcomes may be achieved. Imagine if as much thought and intention were given to systematize the arts, as science and technology, into all aspects of palliative care. We hypothesize that such integration of the Palliative Arts would create a new paradigm in the field and potentially drive much-needed change across health care at large.

Author Disclosure Statement

The authors have no conflicts of interest to report.

Funding Information

All authors have received funding from by the Cambia Health Foundation Sojourns Scholar Leadership Program.

Author W. Rosa is funded by The Rita & Alex Hillman Foundation and is partially funded by the NCI/NIH comprehensive cancer center grant P30 CA008748.