Sometimes, clinicians do not acknowledge how patients' values and beliefs influence how they ascribe meaning to their illness, how they prefer to receive information, and how they make decisions until the end-of-life stage, leading to misunderstandings between clinicians and patients.
Shortly after the birth of her second child, the life of engineer Niyati Tamaskar changed forever.1 I met her in October 2022 at the annual conference of the Society for Integrative Oncology and learned that she had been diagnosed with stage 3 breast cancer at the age of 34.
Although she received standard cancer care, she encountered unique challenges as an immigrant from India. She was encouraged to participate in a support group, but she was unable to relate to its demographic because the patients she saw at the treatment center were older than her and she didn’t meet any women of color.
When she turned to her family, some of her relatives discouraged her from even disclosing her diagnosis despite the obvious fact that she would need help. As a Hindu, she struggled to reconcile her new reality with her belief in karma, wondering whether past actions had contributed to her disease and why she should suffer alone.
Her story confirmed my belief in the unique opportunity I have as a Hindu physician who was born and raised in the United States and has a background in hematology/oncology and hospice and palliative medicine. Over the years, I have had the privilege of caring for patients from diverse cultures and have witnessed firsthand how their values and beliefs influence how they ascribe meaning to their illness, how they prefer to receive information, and how they make decisions. Sometimes, no clinician had acknowledged these considerations proactively until the end-of-life (EOL) stage, which led to misunderstandings between clinicians and patients.
Hinduism is among the 5 major world religions, with more than 1 billion followers worldwide, 94% of whom live in India.2,3 It is projected that the United States will have the largest Hindu population outside of South Asia by 2050.3
In reviewing the literature, I uncovered misunderstandings that have arisen between Hindu patients and health care staff in the United States. One study of Hindu immigrants found that 40% were dissatisfied with their experience in hospice, complaining that staff members did not understand their EOL care preferences.4
Furthermore, I identified mischaracterizations of Hindu beliefs. For example, reports of Hindu patients declining opioids at EOL to maintain mental clarity led the authors of a systematic review of EOL considerations among major world religions to conclude that Hinduism frequently discouraged EOL pain management, despite adult Hindus stating otherwise in other studies.5-7
In 2020, I published a narrative review clarifying these considerations, and the article led to my meeting Ronit Elk, PhD, professor of medicine and associate director of the Southeast Institute for Innovation in Palliative and Supportive Care at the University of Alabama at Birmingham (UAB).8 We discussed her experiences with community-based participatory research (CBPR), a framework grounded in social justice in which community members partner with academics to generate a better understanding of the health problems affecting their population. Health care providers then apply these insights to develop solutions for improving health outcomes and addressing disparities.
Using this approach, Dr Elk and her colleagues defined the cultural values and EOL care preferences of elderly, rural African American patients with life-limiting illness and their relatives in Beaufort County, South Carolina. The understanding thus gained enabled providers at UAB to develop the first culturally concordant EOL interventions: a palliative care tele-consult program, a clinician training program, and a goals-of-care conversation guide yet culturally appropriate models of palliative care (PC).9,10
CBPR resonated with me because to ensure that my own project is conducted in a culturally sensitive manner, I would have to partner with the community and convene an interdisciplinary advisory group composed of its leaders, patients, caregivers, and health care professionals so that communal perspectives are represented in all aspects of project. Second, I had to first present my results to participants and verify that they reflected their real-world experiences.
As I began my hematology/oncology fellowship at Levine Cancer Institute (LCI), Atrium Health, in Charlotte, North Carolina, I worked with Elk and Declan Walsh, MD, chair of the institute’s Department of Supportive Oncology, to devise a CBPR project for Hindu patients with cancer and their caregivers living in the Charlotte metropolitan area.
After winning the Conquer Cancer-Anna Braglia Endowed Young Investigator Award in Cancer Supportive Care, I assembled an advisory group to conduct focus groups with patients and caregivers to understand how Hindu beliefs and values influence their palliative care preferences, then develop and validate the content of a survey on Hindu palliative care preferences for measurement in a larger cohort.
I would be remiss not to highlight the challenges I encountered, from planning to execution. Although the COVID-19 pandemic renewed attention on diversity, equity, and inclusion and the importance of community engagement research, I realized CBPR was unfamiliar to the individuals tasked with helping me prepare my IRB submission. The CBPR features I found intriguing, such as the advisory group, confused others, and having never before conducted this research, I struggled to answer their questions.
However, my mentors’ guidance and the collective wisdom of the international interdisciplinary group of researchers engaged in this work gave me the insights and confidence I needed to address the issues raised by others.
As this project continues, I envision a subsequent project in which a national cohort of Hindu patients with cancer and their caregivers will complete a survey to identify any unmet palliative care needs. The disparities thus unearthed could then inform the development of culturally concordant interventions for Hindus akin to Elk’s work. Although my journey has only just begun, stories like Niyati’s reaffirm my determination to generate the evidence required to support our growing community.
The author wishes to thank Niyati Tamaskar for allowing him to share her story.
Rushil V. Patel, MD, is a third year Hematology/Oncology Fellow at Levine Cancer Institute, Atrium Health, in Charlotte, North Carolina.