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Palliative Care and Mental Health How a Palliative Care Movement Has Grown to Be Inclusive of Its Needs in Kerala, Southern India

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Palliative Care and Mental Health How a Palliative Care Movement Has Grown to Be Inclusive of Its Needs in Kerala, Southern India 9th&10th August 2018 ‘Building Momentum’ Makerere and Mulago PC Unit 10th anniversary • Dr. Chitra Venkateswaran is founder/clinical director of Mehac Foundation, in Kerala India, a not for profit palliative care mode for mental health. She also devotes her time to the palliative care, with emphasis on psychological health • Dr Chitra is also a Professor in Psychiatry, Consultant in Psycho- oncology, Department of Palliative Medicine, Amrita Institute of Medical Sciences, Kochi and National Faculty, Indian Association of Palliative Care • She is also involved in Bioethics, Cairdeas UK and National Advisory Board, Indian Journal of Palliative Care • Graduate, International Palliative Care Leadership Development Initiative, San Diego • Contributor for the development of Palliative Tool kit by Help the Hospices, UK PALLIATIVE CARE AND MENTAL HEALTH HOW A PALLIATIVE CARE MOVEMENT HAS GROWN TO BE INCLUSIVE OF ITS NEEDS IN KERALA, SOUTHERN INDIA Dr Chitra Venkateswaran, MD Professor in Psychiatry, Consultant in Psycho Oncology, Clinical Director Mehac Foundation, Kochi, Kerala, India Member, Board of Directors, International Association of Hospice and Palliative Care Honorary Senior Research fellow, Hull Medical School, UK Kampala 10/08/2018 2/3 of the country’s 300 Kerala palliative care centres and where service is available in every district, it is in the category of approaching 4a World Health Organization Collaborating Centers • Policy, research and training institution of Pain Institute of Palliative Medicine and Palliative Care Kozhikode Society, Calicut, Kerala • WHOCC for ‘Training and Policy on access to Pain Relief Models of care Total care Integration • with Kerala Cancer Model centres - community-based model of delivery of care - Urban setting outpatient-based and home based cares - Home-based care - Establishing psycho oncology models for patients with chronic illnesses in distress, and their caregivers Hospice - Multidisciplinary team Hospitals - Supported by volunteers - Hospice and hospital- - Empowering families based palliative care to patients. Community based model Kerala • Community empowerment • NNPC • health promoting PC • compassionate communities Kellehear A. 2005 Compassionate Cities. Public Health and end of life care. Routledge Oxford Kerala - Paradox More than 30 million people live in a densely populated state Joblessness is rife as there is no industry or manufacturing base Social development has not triggered off economic development Little money to be invested in healthcare and education Explosion of private and expensive health care facilities and schools which poor cannot afford • How palliative care grew to be inclusive of other chronic diseases? Palliative care needs • Hidden people • older people and children • chronic mental health • dual epidemic with HIV • prisoners, people with disabilities, sex workers, substance users • poverty, geography, language and exclusion Grant L et al BMJ Supportive & Palliative Care (2011). Models-strengthening systems Kerala • Disease specific • end stage renal disease • HIV/AIDS • Rehabilitation • Mental health partnership • Disease spectrum and vulnerable groups • children • Elderly • ICU and critical care integration Focus on mental health The need for a model looking into long term care in the community Global burden of mental ill health • Neuropsychiatric disorders account for 14% of global burden of disease • 25-30% of people worldwide has a mental disorder • at least 10 to 20 million of Indian population suffer from major mental disorders • The ‘treatment gap”is very high , estimated to reach about 76 – 85% I low and middle income countries Mental Health Action Trust (MEHAC) Promoting and strengthening systems in the community to provide long term care to chronic mental illness and chronic diseases with psychological issues incorporates palliative care principles with public health approach specific to mental health care with community participation http://www.mehacfoundation.org/ Palliative Approaches in Psychiatry? No explicit palliative approaches in psychiatry, and the debate is controversial Poor prognosis Unresponsive to competent treatment Continue to decline physiologically and psychologically Appear to face an inexorably terminal course Are some psychiatric interventions in fact palliative? Palliative Psychiatry Palliative psychiatry (PP) is an approach that improves the quality of patients and their families in facing the problems associated with life-threatening severe persistent mental illness (SPMI) through the prevention and relief of suffering by means of a timely assessment and treatment of associated physical, mental, social, and spiritual needs. PP focuses on harm reduction and on avoidance of burdensome psychiatric interventions with questionable impact. • So how does this model work? Mehac Foundation Innovative model • incorporates palliative care principles to provide good quality care • specific to mental health with community participation • promotes a public health approach • focusing on well being and stability and not only on symptom control • preventive and treatment strategies Model development • Fifteen functioning service units across 5 Districts • Most units have a basic palliative care service • Outpatient services, short admissions unique home care services • Multidisciplinary team providing holistic care • Volunteers from the community - an integral part of the team • Care is provided across socio – economic stature PPP (P) Model for Social Well Being Local Governing Government Body Family and community support support community and Family system expertise Patients Community Medical Medical Mehac Palliative care Volunteers Social Workers The change…. Palliative Care Traditional approach Symptoms symptom control treating symptoms foster acceptance coping strategies Death developing a culture of impending suicide discussion prolonging life neutral attitude towards death Focus of care Integration of curing the disease psychological, social, predominance of and spiritual aspects biomedical aspects of illness Responsibilities team approach physician / patient as main decision- makers 24 Partnerships Under regular Psycho - social follow up rehabilitation Home care visits 100 361 166 232 255 299 416 416 111 Alleppey Ernakulam Palakkad Malappuram Alleppey Ernakulam Palakkad 416 Alleppey Ernakulam Palakkad Getting back to Occupation 132 176 75 Alleppey Ernakulam Palakkad Focus of 2017-2018 Impact Where we stand today… • 8 years in operation • 15 in core team / 20 community partnerships • We’ve helped more than 5000 people and counting… Hari ….. • Hari 65 yrs old is blind and deaf for years now, is confined to a bed in a dark room in his home. Has bed sores, other nursing issues • Has a chronic mental illness for the last 15 years • Is aggressive, refuse to wear clothes, and cooperate with any daily activity • Has poor sleep • His wife is the only carer, very poor financially and has scarce social support His wife said… He is sleeping now, doesn’t shout and howl at night, I am able to manage him The medicines are good for him… You coming to see him regularly is such a relief… What do we do? From there is nothing we can do To There is so much we can do Acknowledgements Dr Mhoira Leng Dr Manuel Tracshel Dr Bindu Menon All my mentors and friends [email protected] .
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