Secondary Home-based Palliative Care: Impact on Quality of Life of Beneficiaries

Palliative care services are envisioned to enhance the quality of life (QoL) of patients suffering from life-limiting illness. Across the world, a need for extending home-based palliative services to secondary care facilities of the public health system has been felt recently to deal with the rising demand for speciality nursing care and physiotherapy services for palliative patients. Kerala, a pioneer state in universalising palliative care attached to primary care facilities, is implementing the pain and palliative care policy, Government of Kerala, 2019, to initiate palliative services attached to secondary care facilities primarily by establishing a home-based palliative unit (HBPU). To understand the micro-level impact, an attempt is made to assess the QoL of patients registered in a best-performing HBPU attached to a secondary care facility in Kerala and to identify how far the intervention of the palliative unit has impacted the QoL of beneficiaries. To analyse the impact of secondary HBPU on the QoL of its beneficiaries.

The study uses data collected from thirty-eight beneficiaries selected randomly and attached to the palliative unit. Information on various domains of QoL, including the physical, psychological, social, existential, feeling of burden, physical environment, cognition and health awareness, is collected using the McGill QoL Questionnaire-expanded (MQOL-E). In addition, patients were asked how far the QoL has been affected by the intervention of HBPU, rated using a scale of one to ten, with one representing no considerable impact and ten depicting dominant impact.

The QoL of beneficiaries attached to the HBPU unit is above the mean score for most domains except the cognitive domain. Patients perceive a better QoL regarding the social domain, physical environment and health awareness of MQOL-E. Reasonably, these are the domains where patients perceive the dominant impact of HBPU intervention, depicting the effectiveness of secondary palliative care attached to the public health system. The intervention of the HBPU unit could significantly impact health awareness. Along with providing medical care, the HBPU succeeded in providing non-medical services such as psychosocial, financial and rehabilitative support to patients, improving the QoL connected to these domains. This is a result of the coordinated working of the HBPU with the primary care unit, respective Local Self Government Institutions and other government departments and a trained, multifaceted team functioning empathetically to patient needs.

Secondary HBPU units attached to the public health system enhance patients' QoL by enhancing health awareness and psychosocial well-being and reducing feelings of burden. This depicts the significance of HBPUs attached to the secondary level, planned and coordinated at the community level to provide speciality palliative care.