By Chitra Venkateswaran, MD
IAHPC Board Member and Clinical Director, Mehac Foundation
Palliative care has evolved tremendously recently. There are new definitions and concepts, as well as innovative and significant advances in most domains, like education, research, advocacy and—most importantly—the development of palliative care models around the world. The term “serious health-related suffering” itself signals an expansion of the concept of palliative care.1
My experience is in Kerala, India, where serious health-related suffering is clearly visible. In resource-poor settings, palliative care needs are not confined to those with life-limiting or life-threatening conditions. The vulnerable also include people with serious acute or non-life-threatening illnesses; the deprived have poor access to health care services, scarce or limited availability of essential medications, and little support from social systems.2
Palliative care approaches in psychiatry are being actively discussed and garnering attention. In chronic or severe, persistent mental illness, some symptoms and their physical, psychological, social, and existential consequences are almost an irreversible state. In these cases, a palliative care approach to improve quality of life of persons with mental illness as well their families seems of significant value and benefit. Symptom remission is not the primary goal. Care focuses not only on judicious control of symptoms, but also advance care planning and putting an emphasis on helping the family, conducting home visits, facilitating support from the community, and planning housing within the community with the objective of reintegration.
Palliative psychiatry3 is emerging as a comprehensive, total care approach. Inclusive models for long-term care, careful consideration of ethical values, and encouraging and empowering community have led to noticeable positive outcomes in mental health care in Kerala. Mehac (short for “mental health action”) Foundation fulfils this approach in southern Kerala.
Mehac Foundation partnered with The Banyan, a pioneering not-for-profit organization in the southern state of Tamil Nadu, to enact the Home Again4 project, which has been recognized by the World Health Organization.5 Home Again involves the creation of choice-based, inclusive living spaces through clustered or scattered homes in rural or urban neighbourhoods with a range of supportive services for people with persistent mental health issues who are homeless and have been living for extended periods of time in institutional care settings.
Along with housing, the innovative program features allied supportive services, including social care support and facilitation (opportunities for a diverse range of work, facilitation of government welfare entitlements, problem solving, socialization support, leisure and recreation), access to health care, case management (detailed bio-psychosocial assessments and personalized care plans), and onsite personal assistance.
Now in its third phase, the program has spread to several other states and some districts in the northern part of Kerala as well as Bangladesh and Sri Lanka.
In Muhamma, South Kerala, the project is an example of partnership with Panchayat, the local governmental agency, which greatly improves sustainability and local ownership. Community stakeholders have taken the lead in running the program, with the help of experts serving as knowledge and clinical service partners.
The chosen house was refurbished to accommodate five women with mental illnesses. Two women from the community were trained as personal assistants to stay with, support, and supervise the residents. The women live as a family, doing household work where possible, such as cleaning, cooking, and gardening, as well as supporting a member who cannot manage on her own. They are encouraged to go out to shop, attend temple or church, visit neighbors, and generate income for themselves.
A social worker coordinates care, does paperwork, and is a liaison with the funding partners. The Mehac team provides clinical expertise, monitors the project, and plans future components. The local palliative care nurse does regular home visits. Supervision occurs at all levels, including the on-site assistants, social worker, Mehac team, and The Banyan.
This project highlights inclusive care, which is key to mental health care. Traditionally, it has been isolated from primary health care due to stigma at all levels. Home Again is a unique approach for long-term care, pulling together strong social support, demonstrating feasibility of a multidisciplinary method, and showing the sustainability made possible by partnerships between organizations, government agencies, and nongovernment partners aligning to achieve a common goal.
Another Home Again is now being planned with neighbouring Panchayat.
Home Again has been supported by Grand Challenges Canada, Rural India Supporting Trust, and Sundaram Fasteners Limited.