Clinical practice guidelines on assessment of needs among persons with mental illness and persons with substance use disorders with long stay in psychiatric institutions

INTRODUCTION The term long stay or extended stay or prolonged stay has been variously defined in the context of psychiatric hospitalization. While more than 1 year of stay in psychiatric hospitals has been considered as long stay, other definitions of long stay have been 5 years in medium secure and 10 years in high secure care settings.[1] However, persons with mental illness may rarely require more than 90 days of continuous hospitalization. Section 90 (8) of the Mental Health Care Act (MHCA) 2017 states that if more than 30 days of supported admission is required, the need for such admission should be limited to 90 days in the first instance.[2] We have used the term long stay to denote more than 90 days of hospitalization in psychiatric hospitals and when discharge is not possible due to deficiencies in support systems – absent family caregivers or unwilling family caregivers or lack of a safe place to live or challenges in independent living ability if they were to live alone in the community. “Need” is the requirement of the individual that enables them to achieve, maintain, or restore an acceptable level of social independence or quality of life.[3] “Need” is the discrepancy between the current and desired states.[4] While the needs of the long-stay patients are diverse, a broader goal is recovery. The needs of persons with mental illness and substance use disorders (SUDs), as well as the support they require, can vary significantly depending on their underlying mental health conditions, personality traits, and psychosocial circumstances. In this article, we have arranged the needs assessment of persons with severe mental disorders (SMD) like schizophrenia and related disorders and bipolar affective disorders (BPADs) separately from the needs assessment of persons with SUDs. However, such a distinction is artificial; often, there would be similarities rather than differences between needs, and SMD and SUD can co-occur. PROCESS OF DEVELOPMENT OF GUIDELINES A PubMed search using relevant terms of needs, long stay, severe mental illness, and substance use disorders was conducted – (“Health Services Needs and Demand”[MeSH] OR “Needs Assessment”[MeSH]) AND (“Long-Term Care”[MeSH] OR “Length of Stay”[MeSH]) AND (“Mental Disorders”[MeSH] OR “Psychotic Disorders”[MeSH] OR “Schizophrenia”[MeSH]) AND “Substance-Related Disorders”[MeSH]. A gray literature review of various government documents and independent documents from various NGOs and consultation with domain experts were done to develop the Clinical Practice Guideline. The purpose of the assessment of needs among persons with SMD or SUD in long stay can be for any one or more of the following: discharge from hospital and community reintegration, to provide least restrictive environment, and to provide a participatory, rights-based and recovery-oriented care that is holistic and person-centred care and with a focus on psychological, lifestyle, social, and economic interventions, not merely pharmacological interventions. NEEDS OF PERSONS WITH SMDS IN PSYCHIATRIC HOSPITALS The judiciary and the National Human Rights Commission (NHRC) have played a significant role in transforming psychiatric hospitals in India. The NIMHANS/NHRC report of 1999 noted violations of the rights of patients, deficiencies in infrastructure, lack of trained staff, and absence of psychosocial interventions.[5] Both governmental initiatives and the intervention of the NHRC resulted in a marked improvement in the infrastructure, hygiene, availability of drugs, and living conditions in many of the hospitals over the next decade. An in-depth analysis by NIMHANS for the National Commission of Women (NCW) in 2016 recommended that long stays of women must be discouraged in psychiatric hospitals.[6] The Hans Foundation study in 2019 involved a survey of 43 psychiatric hospitals across India and observed that 4935 patients stayed on average for more than 6 years in the closed wards. About one-third of them were admitted by their family members in the psychiatric hospitals. This report further stated significant variations in the number of patients across India. Maharashtra, Tamil Nadu, and West Bengal had over half of all long-stay patients. This report further stated that half of long-stay patients had schizophrenia, 22% had intellectual disability (ID), and 17% had psychosis, not otherwise specified.[7] A range of reasons can contribute to the extended stay of persons with SMDs in psychiatric hospitals. In many instances, family caregivers remain untraceable for a planned discharge and to ensure family reintegration.[8,9] Poor social functioning and independent living abilities have been observed in patients admitted for longer periods.[10] Persons with SMDs may have one or more medical conditions that require frequent medical supervision, or they may have patterns of behavior that pose significant challenges for living in supported living facilities.[11] Negative symptoms of schizophrenia have been observed to be associated with unmet rehabilitation needs.[12] SMD patients may have cognitive impairment with a range of medical problems that interfere with their ability to live independently in the community.[13] Lack of homes to live in and poor community living facilities for persons with SMDs could contribute to prolonged stays.[14] Apart from the individual characteristics like age at the time of admission and functional ability, intellectual disability, personality characteristics, socioeconomic issues, and institutional characteristics, such as whether the institute is an academic institution, appear to play a role in the extended stay of persons with SMDs.[15] Irrespective of a range of reasons contributing to the long stay in psychiatric hospitals, many persons with SMDs were observed to have the ability to live independently if a safe place to live was offered with an adequate range of required support.[16] The extended stay in psychiatric hospitals is multifactorial, ranging from patient characteristics that impact the ability to live a quality life post discharge to the availability of adequate and appropriate community mental health care facilities. Therefore, to understand the needs of long-stay persons with SMDs in psychiatric hospitals, we should examine it from a multidimensional perspective. Often, the needs of persons with SMDs during the initial period of psychiatric hospitalization are related to the control of symptoms irrespective of their clinical diagnosis. It includes improving the disturbances in biological functions and challenging behaviors, thoughts, or perceptual disturbances that may endanger their safety and others. The need to stay in psychiatric hospitals for a long time is often related to morbidities, strengths and deficits, socioeconomic situations, homelessness, family support, substance use, availability of community care facilities, and access to such facilities. Section 98 of MHCA 2017 has stated that the treating psychiatrist in any mental health establishment (MHE) should plan the continuity of mental health care after understanding the choices of persons with SMDs, discussing with relevant mental health professionals in the community where the person with SMD will reside, and the caregivers/family members/nominated representatives.[2] Following these steps for the discharge planning of persons with SMDs who do not have family caregivers can be challenging. Assessment of the needs of long-stay patients may be conceptualized as belonging to two categories. One category of evaluations would be related to the severity of mental illness, activities of daily living, meaningful engagement, and level of awareness about the need for mental health care and treatment. Another category is related to their ability to return to work, reality orientation, strengths and deficits that influence their ability to make choices, and support in the place where they will stay after discharge. However, assessment of needs only helps to understand the types of support and intensity of support needed for persons with SMDs. A range of community-based mental health care services will be essential for offering continued care. Often, such assessment should also include the readiness of persons with SMDs to go back into the community as prolonged stays in psychiatric hospitals may lead to the development of pessimistic attitudes toward living in the community.[9] A few other assumptions or even experiences of psychiatric hospital authorities that could prolong the stay are related to frequent and repeat hospitalizations, which further could be related to poor symptom control and personality trait-related challenges to adjust in the community. A slow transition through various community care facilities will likely enhance community reintegration.[17] The needs assessment should be person-centered as significant differences have been observed between the self-reported needs and those assessed by professionals.[16] The Hans Foundation survey, 2019, stated that about 80% of persons with mental illness staying in psychiatric hospitals for more than 1 year were likely to face mild to moderate challenges in leading a quality community life, and the remaining 20% were likely to face severe to profound difficulties if left alone. They all required some form of support of variable frequency and intensity. Based on our experience, we have formulated a model [Figure 1] in which the PMI can move to any standard living options, subject to the availability of a range of supports and services, personal preferences, and functional abilities. Persons with SMDs can move from one option to another as each option offers a range of freedom, restrictions, and scope for exercising their choices and autonomy.Figure 1: A model to describe the transition of Persons with Severe Mental Disorders (SMD) requiring continuous supportTo understand more about the suitability of long-stay patients to be transitioned, mental health professionals should know not only the strengths and deficits of the persons but also the availability of community mental health care facilities in a geographical location. A simple and generic approach that may be considered for comprehensive needs assessment is the World Health Organisation Community-based rehabilitation matrix, which includes health, education, livelihood, social, and empowerment components.[18] A comprehensive assessment might require several interactions with the person and other important stakeholders. The following tools [Table 1] can be helpful to mental health professionals/trainees to have a broader understanding of the multidimensional needs of persons with SMDs staying in psychiatric hospitals for a prolonged period. However, these tools cannot replace the subjective judgment established collaboratively through an understanding of the pragmatic needs and rights.Table 1: List of tools for assessment of support needs before dischargeAssessment of capacity to make treatment choices and decisions Simple open-ended screening questions such as ‘why might it be difficult for you to manage safely at home?’ for decisions regarding placement and ‘what is this treatment about?’ for decisions about treatment may be used.[19] Capacity Assessment Guidance Document for patients admitted in the psychiatric hospital prepared by the Expert Committee as per Section 81 of the Mental Healthcare Act, 2017 can be used for treatment decisions.[20] Capacity being decision-specific, in general, the ability to understand information for decision making, the ability to retain the information and then weigh the information for decision making, and the ability to communicate the decision should be assessed. To facilitate greater involvement of service users, a shared decision making and more recently the supported decision-making frameworks are increasingly being recommended.[21] Psychosocial assessment A comprehensive psychosocial assessment that covers the domains of income, place of residence, social support, citizenship status, access to social protection measures, and welfare schemes will be necessary to support community integration. Income: Below Poverty Line (BPL) card and/or an income certificate will provide access to welfare schemes of the Government. Social support: The primary, secondary, and tertiary sources of social support should be mapped. Citizenship status: Aadhar card, Passport, and Voter identity cards will be important to exercise the civil, political, and social rights as a citizen. Bank accounts and PAN card will be important to exercise economic rights. Social protection measures: The availability of a Unique Disability Identity (UDID) card for benchmark disability will ensure that social protection measures such as disability pension become accessible. Assessment of activities of daily living (ADL) Basic activities of daily living include procedural skills to manage basic physical needs. An assessment of these skills will assist in determining the degree of daily assistance required. Katz Index of Independence in ADL[22] has six items – bathing, dressing, toileting, transferring, continence, and feeding, which are scored from 0 to 1 for each item. Barthel Index of Daily Living[23] has ten items that measure a person’s daily functioning, specifically the activities of daily living and mobility. 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