Asian Journal of Psychiatry 12 (2014) 3–6

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Impact of Mental Health Care Bill on caregivers of mentally ill: Boon or bane Sujita Kumar Kar *, Rashmi Tiwari Department of Psychiatry, King George’s Medical University, Chowk, Lucknow 226003, U.P., India

A R T I C L E I N F O

A B S T R A C T

Article history: Received 26 November 2013 Received in revised form 18 June 2014 Accepted 22 June 2014

Background: To improvise the shortcomings of existing of mental health legislation (The Mental Health Act, 1987) of India, amendments have been made which ultimately conceptualized, to form the Mental Health Care Bill. Mental Health Care Bill has brought a revolutionary change in the existing mental health legislation which is in its final phase of approval. Method: Many of the changes brought by the Mental Health Care Bill has been appreciated at different level, at the same time it has received robust criticism for over-legalizing and complicating the delivery of mental health care. Result: Caregivers play a pivotal role in the management of psychiatric illness in developing countries like India and they face a lot of challenges for providing support to the mentally ill patients. Discussion: The social, economical, physical as well as the psychological wellbeing of the caregivers are significantly affected while providing care to the mentally ill. The forthcoming Mental Health Care Bill is likely to have a noteworthy impact on the caregivers. It’s high time to analyze, its projected impact on the caregivers of patients suffering from mental illness. ß 2014 Elsevier B.V. All rights reserved.

Keywords: Mental health legislation Mental Health Care Bill Caregivers

Contents 1. 2.

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Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Anticipated impact of Mental Health Care Bill on caregivers of mentally ill . . . . . . . . . . . . . . Decriminalization of suicide . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1. Facilitation of infrastructure and resources for mental health care . . . . . . . . . . . . . . . . 2.2. Right to access to mental health care facilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3. 2.4. Restricting the use of electroconvulsive therapy (ECT) in children with mental illness Prohibition of direct Electroconvulsive therapy (ECT). . . . . . . . . . . . . . . . . . . . . . . . . . . 2.5. Advanced directives and nominated representatives . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.6. Modifications in admission and discharge process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.7. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

1. Introduction Nearly 70 million people, in India have some or the other mental disorders. There is an estimated gap of around 70–80% between the burden caused by mental illnesses and the resources available to prevent or treat these illnesses (National Commission

* Corresponding author. Tel.: +91 9956273747; fax: +91 0522 2265416. E-mail addresses: [email protected], [email protected] (S.K. Kar). http://dx.doi.org/10.1016/j.ajp.2014.06.019 1876-2018/ß 2014 Elsevier B.V. All rights reserved.

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on Macroeconomics and Health, Ministry of Health and Family Welfare, Government of India, 2005). Mental Health Care Bill is framed with an intention to address the shortcomings of the existing Mental Health Act (MHA), 1987. In MHA, 1987, rights of mentally ill and mental health care delivery were not adequately addressed; there was lack of proper provision of services for care, treatment, and rehabilitation of mentally ill persons. Paucity of treatment facilities poses financial, social as well as emotional burden on caregivers of mentally ill persons. It is predicted that the Mental Health Care Bill would bring solutions to the many of these

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unanswered questions raised by the critics of Mental Health Act, 1987. However, the new bill is also not free of controversies. Once the Mental Health Care Bill is implemented, the drastic changes in the mental health legislation are expected to affect every individuals involved with mental health care, ranging from patients and their caregivers to mental health professionals. Since the launch of the idea about ‘‘Mental Health Care Bill’’, rigorous discussions are going on in this regards (Narayan et al., 2011; Kala, 2013; Narayan and Shikha, 2013; Antony, 2010; Sarin, 2012). The discussions mostly focus on issues related to rights of patients with mental illnesses, the impact of Mental Health Care Bill on mental health professionals and difficulties related to misuse of this law (Narayan et al., 2011; Kala, 2013; Narayan and Shikha, 2013; Antony, 2010; Sarin, 2012). The projected impact of Mental Health Care Bill on the caregivers of mentally ill also seems to be substantial, and hence focused in this article. Caregivers of patients with mental illness play a very crucial role in delivery of mental health care. Their role is vital in every step of mental health care. The role of a caregiver is not only limited to facilitating care for the patients with mental illness, but also ensuring compliance to treatment and providing psychosocial support. It further encompasses rehabilitation and integration of the patient to the mainstream of life. A caregiver acts like a shock absorber in neutralizing the stress of a patient with mental illness and ensures protection of the mentally ill. So it is, high time to think about the caregiver burden. The anticipated impact of Mental Health Care Bill on the caregivers of patients with mental illness is a matter of debate. Some of the important proposed changes in mental health legislation that are likely to affect the caregivers of patients with mental illnesses are as follows: (Narayan et al., 2011; Thippeswamy et al., 2012) (1) (2) (3) (4)

Decriminalization of suicide Right to access to mental health care facilities To provide infrastructure and resources for mental health care Restriction in the use of electroconvulsive therapy in children with mental illness (5) Strict prohibition of direct electroconvulsive therapy (6) New concepts like advanced directives and nominated representatives (7) Modifications in admission and discharge process.

(b) Social consequences (stigma and discrimination) (c) Legal consequences (criminalization, punishment). By decriminalization of suicide, stress resulting from social and legal reasons can be minimized which will definitely decrease the burden of the caregivers. This change will definitely an appreciable initiative in country like India, where the legal system is highly burdened and usually takes quite long time for giving decisions. The burden on Indian legal system will also be reduced. 2.2. Facilitation of infrastructure and resources for mental health care In India, there is a scarcity of psychiatrists, clinical psychologists, psychiatric social workers as well as psychiatric nurses. Many psychiatric hospitals and general hospital psychiatric units (GHPUs) run with limited manpower and are poorly equipped, which is compromising the quality of care (Thippeswamy et al., 2012) due to lack of quality care and frequent violation of human rights (legal failure to limit inhumane treatment, abuse and neglect), the patients as well as the caregivers have to suffer a lot (Thippeswamy et al., 2012). If the Government facilitates adequate infrastructure and resources for provision of mental health care as proposed in the Mental Health Care Bill patients with mental illness as well as their caregivers will be benefitted and the burden of care of the caregivers will be reduced (Math et al., 2011). One such welcomed change is replacement of the term ‘‘licensing’’ with ‘‘registration’’, which has made the procedure much easier, leading to establishment of more number of psychiatric hospitals as well as improved accessibility to them (Math et al., 2011). As per the Mental Health Act (1987), the GHPU settings with inpatient facility for psychiatric patients are not subjected to review by mental health review board; hence a standardised mental health care is not available for the patients with mental illness. Mental Health Care Bill focuses on improving the quality of mental health care in all set ups dealing with psychiatric patients including GHPUs (Math et al., 2011). 2.3. Right to access to mental health care facilities An important inclusion in the legislation—Mental Health Care Bill is right to access to the mental health care facilities (Kala, 2013). By this, a patient with mental illness can avail facilities like (Kala, 2013; Gopikumar and Parsuraman, 2013):

Any change can have some positive as well as negative impacts, so we have tried to highlight, both the positive and negative impacts of the changes proposed in mental health legislation on the caregivers of patients with mental illnesses. The Mental Health Care Bill is yet to be implemented and hence its impacts discussed here are only anticipated ones.

(a) Provision of essential psychotropic medications, free of cost (b) Insurance coverage for mental illness (c) To avail funding for private consultation, if district mental health service is not available (d) It ensures health care, treatment, rehabilitation in least restrictive environment respecting the rights and dignity.

2. Anticipated impact of Mental Health Care Bill on caregivers of mentally ill

By these recommendations, the poor people which constitute a larger chunk of the society will be highly benefitted. The financial burden as well as psychosocial burden of the caregivers will be reduced to a large extent.

2.1. Decriminalization of suicide In the Mental Health Care Bill, it is proposed to decriminalize suicide, which is highly appreciated at every level (Kala, 2013; Sachan, 2013; Bhaumik, 2013). The attempts of suicide usually result from extreme stress in the life of the concerned individual. But the fact is that after attempted suicide, the stress in the life of individual as well his or her family further increases. The postsuicide attempt related stresses are the cumulative result of (a) Psychological consequences (interpersonal issues and mental health issues related to suicide attempt)

2.4. Restricting the use of electroconvulsive therapy (ECT) in children with mental illness Even though there is no evidence of more side effects of ECT in pediatric population, its use is restricted in this age group by the propositions of Mental Health Care Bill (Narayan et al., 2011; Kala, 2013; Gangadhar, 2013). After review of the panels of mental health review board, the need of ECT will be decided on case to case basis (Kala, 2013). This proposition may deprive a minor from an essential modality of lifesaving treatment. The consent of

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caregivers for this treatment carries little weightage. However, in emergency needs, the concerned psychiatrist may consider ECT after obtaining the consent from the caregiver or guardian and prior permission from concerned mental health review board (The Mental Health Care Bill. Ministry of Health and Family Welfare, Government of India, 2013). It will be practically impossible to predict, when a patient will need ECT. Hence, prior permission from board may not be possible in an emergency situation. It will be of use only for elective ECT. Use of ECT as an emergency intervention will be restricted. 2.5. Prohibition of direct Electroconvulsive therapy (ECT) In the Mental Health Care Bill, use of direct (unmodified) ECT is proposed to be banned (Narayan et al., 2011; Kala, 2013). Banning direct ECT will deprive many patients in GHPUs from an essential modality of treatment. Many GHPU settings in our country are underequipped and run with limited manpower. Anesthetist back up for psychiatric units is not available in many treatment settings which limit the use of modified ECT. With ban of direct ECT; only modified ECT will be available for clinical practice. Modified ECT in comparison to direct ECT is more expensive (Gangadhar, 2013). The expense of anesthetic medications will add to the financial burden of the caregivers (Gangadhar, 2013). In countries like India, where nearly half of all ECTs administered are direct ECTs, this decision will drastically limit the use of ECTs in patients who really need it (Gangadhar, 2013; Chanpattana et al., 2005). when a patient will be deprived of an age old essential modality of treatment, which at times is lifesaving, the mental health care will be affected. On the other way, the sole focus will shift to develop better set ups for modified ECT. It, being more patient friendly, is likely to be more acceptable in the society. 2.6. Advanced directives and nominated representatives The Mental Health Care Bill has a new provision in the name of advanced directive and nominated representative (Narayan et al., 2011; Kala, 2013; Bhaumik, 2013). In the advanced directive, an individual can decide, the way he or she wants to be treated in future if he or she loses ability (mental capacity) to make decisions due to mental illness (Bhaumik, 2013). The patient may refuse for any particular modality of treatment (e.g.—Electroconvulsive therapy or injectable medications) and even refuse for inpatient treatment (Kala, 2013). But it is very difficult to predict the nature of future episode in a patient. If his or her mental illness, in future, warrants administration of injectable or electroconvulsive treatment, the patient cannot be treated due to the advanced directive. Caregiver’s consent for inpatient treatment or any particular modality of treatment will not carry any weightage before the advanced directive. This will ultimately affect the care of the patient and is likely to increase the caregiver burden. If a patient, who has refused for ECT and injectable treatments in his advanced directive, develops catatonia in future, as per the advanced directive he cannot be given ECT or injectable benzodiazepine. Similarly the provision of ‘‘nominated representative’’ is at risk to be abused. A patient with paranoid schizophrenia may not trust on his/her spouse or family members and may nominate a friend or neighbor or someone else as the nominated representative, who may take the advantage of patient’s mental illness and may create property related litigations. The burden of family may increase in such circumstances due to related legal and financial issues and above all if we see in Indian setting where bulk of care givers are from rural background, they are uneducated, will they be able to protect and reproduce the directives as and when required? This is again likely to increase the responsibilities of already overburdened caregivers of mentally ill patients. In countries like India,

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families form the backbone of support to the patients, yet they receive hardly any support from the state. In this scenario, there is a risk that families would start disowning their patient which is likely to affect the continuity of care. In India, there is an intense need of caregiver empowerment, which the current Mental Health Care Bill has not addressed adequately. 2.7. Modifications in admission and discharge process As per the Mental Health Care Bill, the patient has been given the right to decide for admission. The patient can challenge the caregiver’s or mental health professional’s decision for admission. The patient can ask for discharge, any time he or she wants. If the patient will have any objection regarding admission or discharge, he/she can file a petition at the mental health review commission for the review of the same (Narayan et al., 2011; Kala, 2013). The panels of mental health review commission, who will be the nonpsychiatric, judicial personals will review the need for admission or discharge and give their decisions (Kala, 2013). This is a very crucial step which may harshly affect the continuation of treatment. Similarly any person can come with some psychiatric complaints may ask for admission, even if it is not required. Malingerers can take advantage of the legal provision. Patients suffering from paranoid schizophrenia, severe personality disorder, substance use disorder, Bipolar disorder-manic episode, severe depressive episode and suicidal patients may refuse for admission or treatment. Caregiver’s wish or mental health professional’s suggestion for admission will carry little weightage before the patient’s refusal, which may significantly increase the burden and stress of the caregivers. Another potential area of difficulty is in admission of minors. As per bill a minor can be admitted only in exceptional circumstances but these circumstances are not clarified (Narayan et al., 2011). Admission formalities have been made so difficult, needing clearance by two professionals, one psychiatrist other an MHP or RMP (Registered Medical Practitioner) (Narayan et al., 2011). The family member’s concerns, difficulties and distresses are ignored in this provision. The distress of the already distressed caregiver will be increased and long term psychiatric care will be severely affected. As it is planned to keep only judicial members in the mental health review commission who are likely to have poor conceptualization about mental illness, there is a risk of them getting biased by patient’s petition, without understanding the whole situation (Kala, 2013). Another important question is–whether the overburdened legal system can timely review the need for admission or discharge of all patients who need admission or discharge. It is proposed that the Mental Health Care Bill will also cover the GHPUs, where the open inpatient setting provides care with support from the caregivers unlike the mental health institutions where there is optional provision for the caregivers to stay with the patient. By bringing the GHPUs under coverage of the Mental Health Care Bill, the resource scarce psychiatric treatment settings, mental health professionals as well as the caregivers will be over burdened with complex legal works and litigations. 3. Conclusion The Mental Health Care Bill makes significant strides over the existing MHA bringing about protection and empowerment of persons with mental illness. This is indeed a welcome change. However further discussion and debates are ongoing for perceived shortcomings. Effective implementation will require a substantial change in the system currently in place and will need extensive inputs of manpower and finances. There is a possibility of breach of trust between the patient with mental illness and their caregivers which may result in increase in homelessness. Caregivers may

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dislike the excessive legal involvement in the care of their patients and as a result of which may avoid the psychiatric treatment and go for traditional healers. It will not only increase the burden or stigma on the family but also on the society. There are certain loopholes in the Mental Health Care Bill, questioning its applicability and meaningfulness for the Indian population. As admission procedures, treatment options and decision making is so legalized and bureaucratized, that it will likely to increase stigma and hesitation to seek treatment from mental health professionals. In countries like India, where there is poor mental health awareness, stigma, myths, lack of manpower and scarcity of mental health care facility for delivery of mental health care, the practical utility of this law is highly questionable. If the shortcomings of the Mental Health Care Bill are not addressed appropriately, then it will just add to the burden of care of caregivers. References National Commission on Macroeconomics and Health Ministry of Health and Family Welfare, 2005. Government of India, http://www.who.int/macrohealth/ action/Report%20of%20the%20National%20Commission.pdf (last accessed on 21.11.2013).

Narayan, C.L., Narayan, M., Shikha, D., 2011. The ongoing process of amendments in MHA-87 and PWD Act-95 and their implications on mental health care. Indian J. Psychiatry 53, 343–350. Kala, A., 2013. Time to face new realities: Mental Health Care Bill—2013. Indian J. Psychiatry 55, 216–219. Narayan, C.L., Shikha, D., 2013. Indian legal system and mental health. Indian J. Psychiatry 55, 177–181. Antony, J.T., 2010. On drafting a new Mental Health Act. Indian J. Psychiatry 52, 9–12. Sarin, A., 2012. On psychiatric wills and the Ulysses clause: the advance directive in psychiatry. Indian J. Psychiatry 54, 206–207. Thippeswamy, H., Goswami, K., Chaturvedi, S., 2012. Ethical aspects of public health legislation: the Mental Health Care Bill, 2011. Indian J. Med. Ethics 9 (1) 46–49. Sachan, D., 2013. mental health bill set to revolutionise care in India. Lancet 27 (382(9889)) 296. Bhaumik, S., 2013. Mental health bill is set to decriminalise suicide in India. Br. Med. J. 347, f5349. Math, S.B., Murthy, P., Chandrashekar, C.R., 2011. Mental Health Act (1987): need for a paradigm shift from custodial to community care. Indian J. Med. Res. 133, 246–249. Gopikumar, V., Parsuraman, S., 2013. Mental Illness, care and the bill: a simplistic interpretation. Econ. Pol. Wkly 48, 9. Gangadhar, B.N., 2013. Mental Health Care Bill and electroconvulsive therapy: anesthetic modification. Indian J. Psychol. Med. 35, 225–226. Ministry of Health and Family Welfare, Government of India, 2013. The Mental Health Care Bill, 2013, mohfw.nic.in/WriteReadData/l892s/Mental Health Care Bill 2013.pdf (last assessed on 16.4.2014).

Impact of Mental Health Care Bill on caregivers of mentally ill: Boon or bane.

To improvise the shortcomings of existing of mental health legislation (The Mental Health Act, 1987) of India, amendments have been made which ultimat...
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