An urgent need for Palliative care models for chronic mental illness

Author – Dr. Chitra Venkateswaran, Kochi, Kerala

 

World Mental Health Day was commemorated on October 11^th, 2021 with a focus on “Mental health in an unequal world”. This rings so clearly alongside this year’s World Hospice and Palliative Care Day theme, ‘Leave no one behind; equity in access to palliative care’. What better way to highlight the common strong foundation of shared values for both streams of care? Both mental health and palliative care, emphasize person-centered care with a focus on establishing and sustaining effective and trusting relationships with those affected. Both seek to ensure a holistic approach which includes the family as a partner in providing care. Additionally, both utilize a multidisciplinary team mode of working.

Globally, there has been a great deal of focus on humanity’s vulnerability during the Covid-19 pandemic with mental health challenges affecting so many groups; and of course multimorbidity and palliative care often neglected yet needing to come to the fore. We see the issues surrounding loss, grief, emotional distress, impact of isolation, high levels of burnout and even existential crises being discussed much more on public forums. There has never been a more appropriate time to discuss the integration of mental health care and palliative care.

Mental disorders accounted for 125·3 million DALYs (disability adjusted life years) in 2019. The emergence of the COVID-19 pandemic in the year 2020 has created an environment where many determinants of poor mental health outcomes are exacerbated ¹. One in seven Indians was affected by mental disorders of varying severity in 2017. The proportional contribution of mental disorders to the total disease burden in India has almost doubled since 1990. In 2017, 197·3 million (95% UI 178·4–216·4) people had mental disorders in India ².

Persons living with chronic mental illness remain without access to appropriate care in the community. These people also represent a vulnerable population, face stigma, are neglected often by both the medical world and the society, or are managed aggressively and often end up in poly pharmacy with unwanted side effects ³. It is well established that mental disorders contribute to an enormous burden on individuals, families and societies causing a great deal of suffering for all involved. This burden reaches enormous magnitudes in a developing country like India.

Care and support including human, social and financial resources are needed to provide access to effective and humane treatment for people with mental disorders. The long drawn out illness trajectory of severe mental illnesses actually indicates that a palliative approach is all the more important; with focus on Quality of lives and optimal management of the symptoms and disability.

In resource poor settings which comprises the most vulnerable, the need for palliative care often is not limited to individuals with life-limiting or life-threatening conditions like cancer alone ⁴. Illness-related suffering may occur for many individuals with serious conditions – acute or non-life-threatening due to limited access to services to prevent, diagnose, or treat disease and limited social support systems. Mental health conditions are one of the major groups of non communicable diseases (NCDs) with crucial relevance in efforts to control and prevent other NCDs ⁵. The World Health Organisation (WHO), has emphasised this point in their declaration on inclusion of mental illness as a non-communicable disease ⁶.

Psychiatric issues in palliative care are being addressed much more than before and with special branches like palliative care psychiatry/psycho-oncology now garnering more recognition.However, the need for palliative care has not yet been recognisized among mental health professionals, psychiatry does not overtly provide palliative care for patients with chronic mental illness other than routine treatment till end of life ⁷. Psychiatry too has much to gain from acknowledging the palliative nature of some of its interventions.

In addition, people with pre-existing mental health problems have comorbid physical illnesses with poor outcomes. People with severe and persistent mental illness have an excess mortality, a reduced life expectancy which translates to a 13-30 year shortened life expectancy. This group which require end-of-life care is possibly among the most underrepresented and deprived populations in our society ^{8, 9}.

The concept of palliative psychiatry is evolving globally to reach out to people with serious mental illness suffering. A working definition of “palliative psychiatry” has been proposed as a starting point to such approaches in mental illness ⁹.

In parallel, in the natural course of the evolution of a palliative care movement, such models for mental health (Mehac Foundation, MHAT, specific clinical programs by individual palliative care units) have also gradually begun to establishing itself in Kerala, India.

The initiation and the establishment of Mehac Foundation ¹⁰, a not-for-profit foundation, took roots in the palliative care movement in North Kerala. The service incorporates the principles of palliative care  along with a public health approach that is specific to mental health care with community participation. Since its inception  in 2008, Mehac has taken a proactive role in the community, with home care projects as the unique component. This has helped create a space for mental health at grass root level, demonstrate examples of public-private-NGO partnerships, take proactive roles in advocacy and awareness issues and enable preventive, treatment and rehabilitation.  The characteristic feature is that it is mostly integrated with palliative care at the village level, and it indirectly addresses factors like stigma and other social factors. This is also growing to be a feasible model that can be replicated. These services with partnerships, task shifting, community participation and empowerment played an effective role in the recent floods in 2018 in Kerala and in the current pandemic.

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References:

1. The Institute for Health Metrics and Evaluation (IHME). Global, regional, and national burden of 12 mental disorders in 204 countries and territories, 1990–2019: a systematic analysis from the Global Burden of Disease Study 2019. http://www.healthdata.org/research-article/global-regional-and-national-burden-12-mental-disorders-204-countries-and. Accessed on 26/10/2021
2. India State-Level Disease Burden Initiative Mental Disorders Collaborators. The burden of mental disorders across the states of India: the Global Burden of Disease Study 1990-2017. Lancet Psychiatry. 2020 Feb;7(2):148-161. doi: 10.1016/S2215-0366(19)30475-4. Epub 2019 Dec 23. PMID: 31879245; PMCID: PMC7029418
3. Trachsel M, Irwin SA, Biller-Andorno N, Hoff P, Riese F. Palliative psychiatry for severe and persistent mental illness. Lancet Psychiatry. 2016;3:1–2. doi: 10.1016/S2215-0366(16)00005-5
4. Doherty M, Power L, Petrova M, Gunn S, Powell R, Coghlan R, et al. (2020) Illness-related suffering and need for palliative care in Rohingya refugees and caregivers in Bangladesh: A cross-sectional study. PLoS Med 17(3): e1003011. https://doi.org/10.1371/journal.pmed.1003011
5. Linking Mental Health and NCD Alliance Campaign Priorities for the 2018 United Nations High-Level Meeting on NCDs. https://www.mhinnovation.net/sites/default/files/downloads/resource/Linking_Mental_Health_NCDs_HLM3_Priorities_2018.pdf. Accesses on 26/10/21
6. Declaration on Non Communicable diseases UN General Assembly( 2011)
7. Trachsel, M., Irwin, S. A., Biller-Andorno, N., Hoff, P., & Riese, F. (2016). Palliative psychiatry for severe persistent mental illness as a new approach to psychiatry? Definition, scope, benefits, and risks. BMC Psychiatry, 16, 260. http://doi.org/10.1186/s12888-016-0970-y
8. McGrath,P and Holewa, H. (2004) Mental Health and Palliative Care: Exploring the Ideological Interface. International Journal of Psychosocial Rehabilitation.9,(1)107-119
9. De Hert M, Cohen D, Bobes J et al.(2011). Physical Illness in patients with severe mental disorders.1.Prevalence,impact of medications and disparities in health care. World Psychiatry, Feb;10(1):52-77
10. Trachsel, M., Irwin, S. A., Biller-Andorno, N., Hoff, P., & Riese, F. (2016). Palliative psychiatry for severe persistent mental illness as a new approach to psychiatry? Definition, scope, benefits, and risks. BMC Psychiatry, 16, 260. http://doi.org/10.1186/s12888-016-0970-y
11. Venkateswaran, C, Jose, S and  Abraham F P. (2014) Community mental health and NGO engagement: the Kerala experience. In: Francis, Abraham P., (ed.) Social Work in Mental Health: areas of practice, challenges and way forward. SAGE Publications, New Delhi, India, pp. 276-300.