Grace H Taylor1, Eric L Krakauer2, Justin J Sanders3,4,5. 1. Department of Emergency Medicine, University of California, San Francisco, San Francisco, California, USA. 2. Department of Global Health and Social Medicine, Harvard Medical School, Global Palliative Care Program, Massachusetts General Hospital, Boston, Massachusetts, USA. 3. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA. 4. Division of Palliative Medicine, Department of Medicine, Brigham and Women's Hospital, Boston, Massachusetts, USA. 5. Ariadne Labs, Boston, Massachusetts, USA.
Abstract
Background: People in low- and middle-income countries with serious health problems rarely have access to palliative care. Promising models of palliative care delivery have emerged in India despite widespread poverty and poor health care infrastructure. Objective: To explore structural and philosophical aspects of palliative care delivery in a low-resource setting. Design: One author spent six months as a participant observer at Pallium India (PI), a nongovernmental organization recognized for leadership in palliative care delivery in Kerala, India. We collected administrative data, conducted semistructured interviews with key stakeholders, and observed clinical encounters and other organization-led events. Results: We performed 73 interviews with patients, families, clinicians, staff, and volunteers, and observed 180 patient encounters. The majority of palliative care patients did not have cancer. Many had chronic diseases that were not immediately life threatening. Services addressed a broad range of patients' medical, psychological, social, and/or financial needs. PI's care delivery maximizes accessibility. Conclusions: PI employs an expansive definition of palliative care and adapts services to respond to patients' diverse needs. This accessible, people-centered care is necessary in low-resource settings to alleviate multifaceted suffering caused by gaps in the health care system, poor social support, and poverty.
Background: People in low- and middle-income countries with serious health problems rarely have access to palliative care. Promising models of palliative care delivery have emerged in India despite widespread poverty and poor health care infrastructure. Objective: To explore structural and philosophical aspects of palliative care delivery in a low-resource setting. Design: One author spent six months as a participant observer at Pallium India (PI), a nongovernmental organization recognized for leadership in palliative care delivery in Kerala, India. We collected administrative data, conducted semistructured interviews with key stakeholders, and observed clinical encounters and other organization-led events. Results: We performed 73 interviews with patients, families, clinicians, staff, and volunteers, and observed 180 patient encounters. The majority of palliative care patients did not have cancer. Many had chronic diseases that were not immediately life threatening. Services addressed a broad range of patients' medical, psychological, social, and/or financial needs. PI's care delivery maximizes accessibility. Conclusions: PI employs an expansive definition of palliative care and adapts services to respond to patients' diverse needs. This accessible, people-centered care is necessary in low-resource settings to alleviate multifaceted suffering caused by gaps in the health care system, poor social support, and poverty.
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