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Rheanna Velasquez | Community Knowledge of Palliative and Hospice Care as Narrative-Centered Archive

Rheanna Velasquez | Community Knowledge of Palliative and Hospice Care as Narrative-Centered Archive

All but 7 of Ohio's counties are projected to have 25+% of populations 60+ by 2030
Global life expectancy for women by 2050
Global life expectancy for men by 2050
Smiling woman with glasses and long dark hair

About the Author

Rheanna Velasquez is an undergraduate fellow in the Global Arts + Humanities’ 2022-2023 Society of Fellows Cohort. She is pursuing a major in neuroscience and minors in English and public health. Velasquez is passionate about studying how culture and society impact health, illness and the practice of medicine. She is interested in researching how patient and provider narratives can constitute archives that document values, relations and unmet community needs and as such can contribute to improving health equity and access to care. After graduation, she plans to attend medical school and continue engaging in research and outreach to reduce healthcare disparities.   

Project Overview

Over 70% of U.S. adults lack knowledge of palliative care (Flieger et al., 2020). Recognizing existing gaps in community knowledge, this project seeks to investigate when, where and how knowledge about palliative and hospice care is communicated.

Serious illness is traditionally a highly private and personal experience. This project underscores how lived experiences shape perceptions of options for care and recognizes the community of providers, patients and family members itself as an archive. In investigating community-identified barriers and facilitators to utilizing palliative and hospice care, this project explores access to care and how it intersects with the challenge of effectively generating archives on experiences navigating illness due to its sensitive nature.

Literature addressing broad disparities in knowledge and access to palliative and hospice care are presented as the first phase of the project and highlight the urgency of responding to existing limitations on how stories and knowledge related to serious illness are transmitted. Interviews with providers and community members regarding their knowledge and perspectives of palliative and hospice care in Columbus, Ohio, are being conducted as the second phase of the project. By interrogating how various social, cultural and structural factors impact perceptions, discourse and potential decisions in managing illness, this work aims to identify facilitators and barriers to care and eventually inform recommendations for improving access to quality and personalized care.

Key Topics

We live in an aging world. All but seven of Ohio’s counties are projected to have 25% or more of their populations at or above the age of 60 by 2030 (Ohio Department of Aging, 2018). In Ohio and worldwide, populations are both aging and living longer. Global life expectancy at birth is projected to reach 80 years for women and 75 years for men by 2050 (United Nations, 2023).

As people live longer, the risk of developing chronic conditions such as dementia, heart disease and stroke, cancer, diabetes and respiratory disease increases, impacting potential need for more complex medical care in later life. Palliative care is defined by the WHO as a holistic approach to improving quality of life for patients and families facing challenges associated with serious illness through prevention and relief of suffering (Connor et al., 2020). While appropriate for individuals of all ages experiencing serious illness, not just older adults, palliative care becomes even more valuable as aging populations develop new needs, extending potential support to patients and families in identifying and achieving goals of care. Developing community-informed archives reflecting how information, lack of information and/or misinformation shapes discussions on goals and options for care is critical in promoting the delivery of high-quality care that aligns with patient values.

"Goals of care" refers holistically to the process of making medical decisions and may include preferences about specific treatments, the intensity of care and planning for future care needs (advance care planning). Initially developed as a framework to improve documentation of decision-making and limitations on medical treatment, recent literature has emphasized the communication process, rather than the archival one of generating actualized records, as more important to successful outcomes (Sudole et al., 2018; Tulsky, 2010). This highlights the value in reconceptualizing archives as centered in a person and their narrated experiences. Both goals of care and end of life discussions tend to be delayed until an acute event occurs or the patient is in crisis, often unable to fully articulate their preferences for treatment (Odejide et al., 2019). Identifying challenges to the communication process between physician and patient as the knowledge-bearing medium thus becomes critical.

Intersecting patient and family, physician and system-level barriers contribute to the difficulty in opening effective goals of care conversations. Decline and death remain emotionally laden and stigmatized topics, with religious and cultural factors also impacting non-engagement with advanced care planning (Crooks et al., 2023). Lack of family agreement in goals of care, difficulty understanding limitations of life-sustaining treatment, and language barriers may also contribute (Piggott et al., 2019). Physicians also describe uncertainty about prognosis, fear of destroying hope or provoking anxiety and time constraints as barriers (Dunlay et al., 2015; Udo et al., 2018).

Early considerations of goals, values and treatment preferences are associated with increased patient autonomy, reduced unwanted treatments and reduced length and number of hospitalizations, as physicians can better align care provided with the goals and values identified by patients and their loved ones (Goswami, 2021). Because values and priorities can change over time, goals of care discussions are a longitudinal process. Recognizing how we hold space for or avoid discussions on clinical decline, death and dying, normalizing community-led conversations around illness and death and possibly reconceptualizing goals of care discussions as centered on how we want to live as much as how we want to die (LeBlanc & Tulsky, 2022) can reduce barriers to effective goals of care conversations and facilitate shared decision-making.

Similar to goals of care conversations, referrals to palliative and hospice care also occur late in the disease course. In one study, patients received palliative and hospice care on average 38 and 20 days before death, respectively (Gidwani et al., 2016). Stigma, limited availability of palliative care teams and misperceptions that specialized palliative care discourages active therapy contribute to late referrals (Hausner et al., 2021). 

Palliative care, focused on optimizing quality of life for patients and families affected by severe illness, is independent of life expectancy and can be used in conjunction with curative or life-prolonging treatments. Palliative care can be pursued at diagnosis, during curative treatment or at end of life. Hospice provides comfort care to individuals experiencing serious illness with a life expectancy of six months or less who have discontinued attempts to cure the illness. The association of palliative care and hospice with death contributes to stigma and decreased willingness to use these services (Alcalde & Zimmerman, 2022; Shen & Wellman, 2019; Tate et al., 2020).

Palliative care’s strong historical ties to the care of cancer patients also means patients with common non-cancer serious illnesses are more likely to have unmet needs, although studies have suggested they have similar disease-related burdens and prevalence of physical, psychological, social and spiritual concerns (Bandeali et al., 2020; Kavalieratos et al., 2014; Lastrucci et al., 2018). Other factors including inadequate insurance coverage, poverty and geographic isolation contribute to poor access to care (Ollove, 2017; Wachterman & Sommers, 2020). These differences in access to hospice and palliative care disproportionately affect low-income and racial minorities, resulting in greater pain, financial distress and caregiver and family burden (Wachterman & Sommers, 2020).

Amplifying the stories and narratives reflecting how these communities are disproportionately impacted is imperative in moving toward more equitable care. This project seeks to honor stories of health and illness as repositories of information that can potentially be mobilized to highlight and address health disparities while also recognizing the challenges of compiling such an archive due to the sensitive and private nature of experienced obstacles to health and health outcomes.

Palliative care is defined by the WHO as a holistic approach to improving quality of life for patients and families facing challenges associated with serious illness through prevention and relief of suffering (Connor et al., 2020).