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|Year : 2019
: 61 | Issue : 10 | Page
|Family matters! – The caregivers' perspective of Mental Healthcare Act 2017
KS Pavitra1, Shubrata Kalmane2, Akilesh Kumar3, Mahesh Gowda4
1 Consultant Psychiatrist, Department of Psychiatry, Sridhar Neuropsychiatric Centre, Shimoga, Karnataka, India
2 Associate Professor of Psychiatry, Subbaiah Institute of Medical Sciences; Managing Trustee, Shimoga, Karnataka, India
3 Caregiver of a Patient and Clinical Research Coordinator, Kshema Trust, NGO for Mental Health, Shimoga, Karnataka, India
4 Director, Spandana Health Care, Bengaluru, Karnataka, India
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|Date of Web Publication||8-Apr-2019|
| Abstract|| |
Mental health continues to fight for acceptance in health care all over the world. The need for a separate act for mental illnesses proves this fact even more. The very nature of the mental illness has necessitated legislation to aid the service providers and service users. The Mental Healthcare Act 2017 has taken great initiatives in terms of protection of human rights for people with mental illness such as the inclusion of mental illness in health insurance, stress on informed consent, decriminalization of suicide, and introduction of advance directives (ADs) and punishment to those who violate the law. However, in a country like India where the family as a unit has more significance than personal autonomy, the new act emphasizes the patient's rights and, in doing so, may make the doctors more defensive and fearful in making clinical decisions, thus shifting the burden to the shoulders of the family members. There is a need for suitable amendments to include the family's concerns as well; otherwise, the present act would stand as an alien Western law enforced on Indian cohesive family dynamics. Qualitative studies are required from the family's perspective to illustrate the hindrances that the patients' families are facing. In the context of Indian family structure and dynamics and working in the Indian community, we feel that without suitable amendments to include the family's concerns, the present act would stand as an alien Western law enforced on Indian cohesive family dynamics.
Keywords: Caregiver, family, Mental Healthcare Act 2017
|How to cite this article:|
Pavitra K S, Kalmane S, Kumar A, Gowda M. Family matters! – The caregivers' perspective of Mental Healthcare Act 2017. Indian J Psychiatry 2019;61, Suppl S4:832-7
| Introduction|| |
Mental health continues to fight for acceptance in the health-care scenario all over the world. Despite the progressive leaps in the field of mental health care, physical dimension continues to trump over the psychological dimension in India. The very need for a separate act for mental illnesses proves this fact even more.
In India, the family is the main support system for people with mental illnesses. It has been observed that >90% of patients with chronic mental illness live with their families and continue to take care of basic necessities.,, Most often, the patients who have mental illness are brought for psychiatric help by the family. The family members take care of their medications, earn a living for them, stay with them, and most importantly, offer them emotional and psychological support. This also has a significant role in the rehabilitation of the patient and in bringing him or her to the mainstream. This family support system, which is unique to India, is supposed to be one of the good prognostic indicators for mental illness. Family means to feel secure and to be loved and cared for. Conventionally, joint family setups in India have taken care of the older adults and sick people with utmost attention. Thus, the family has always taken the major share in responsibilities of mental health care compared to the government.
The very nature of the mental illnesses has necessitated legislation to aid health-care seekers, health-care providers, and caregivers. The Indian Lunacy Act of 1912 was repealed with the enactment of Mental Health Act of 1987. However, the act was viewed as seriously flawed because of its basic assumption that mentally ill persons are violent and dangerous. Furthermore, the act was criticized for its neglect of community-based mental health care and tenets of the National Mental Health Program; lack of attention to the WHO guidelines; retention of a criminal flavor; lack of attention to discharge planning, care, and rehabilitation; and failure to address social stigma and societal ignorance. There were several recommendations for the improvement in this act to make the care for the mentally ill better. Mental Healthcare Act (MHCA) was conceptualized on the basis of the United Nations Convention on the Rights of Person with Disabilities with significant stress on the human rights of People With Mental Illness (PWMI). The new MHCA came into existence in May 29, 2018. There are many positive steps taken in terms of protection of human rights for PWMI such as inclusion of mental illness in health insurance, stress on informed consent, decriminalization of suicide, provision of advance directive which allows PWMI to decide treatment in case of loss of capacity in the future, and punishment to those who violate the law., However, in bringing these changes and trying to simplify the procedures, the current act (such as Section 102) seems to have complicated the matter further for the caregivers in a few instances. Here, we discuss the specific positive and negative aspects of MHCA 2017 with respect to family in the care of mental illness, with real clinical experiences wherever appropriate.
| State's Responsibility for the Treatment of Mental Illness|| |
The new legislation declares that “every person shall have a right to access mental health care and treatment from mental health services run or funded by the appropriate Government” (Section 18). This “shall mean good-quality mental health services of affordable cost; available in sufficient quantity; accessible geographically; without discrimination on the basis of gender, sex, sexual orientation, religion, culture, caste, social or political beliefs, class, disability, or any other basis; and provided in a manner that is acceptable to persons with mental illness and their families and caregivers” (Section 18). If this is implemented effectively, this would be a great relief for the families of the PWMI of India where financial burden is one of the important reasons for the treatment gap as well as drug default., Those PWMI who live below the poverty line or are destitute or homeless shall be entitled to mental health treatment and services free of charge. All medicines on the essential drug list shall be made available free of cost to all PWMI at all times at health establishments run or funded by the government. However, though this is a very welcome point, the actual implementation appears difficult in the present situation, wherein only 0.06% of the budget for health is allocated to mental health services. The care should be taken that the allocation of budget to mental health increases, which will help in implementation of the above provisions.
| Overcautiousness Towards the Use of Electroconvulsive Therapy|| |
Electroconvulsive therapy (ECT) is a well-established, lifesaving treatment for individuals with severe mental disorders, especially those with suicidal risk.
Direct ECTs are banned in the MHCA 2017. Currently, most of the psychiatric hospitals in the peripheries have been using direct ECTs. This may be due to lack of adequate infrastructure, less number of anesthetists, poor resources, and financial constraints. Switching over completely to modify ECTs might not be difficult for clinicians, but the caregivers would be at the receiving end in terms of increased expenditure when availing services in private. On a positive note, ECTs in psychiatric setups are going to improve in quality, with improved transparency and appear more “medical” rather than being termed as “shock treatment,” making it more acceptable to patients and families.
| Decriminalization of Suicide|| |
Mrs. D, a 30-year-old married female, presented to a psychiatric care center. She was diagnosed with severe depression without psychotic symptoms, with active suicidal ideations. A careful, detailed evaluation revealed that the current episode started 3 months back. A month ago, she had attempted suicide by consuming thirty tablets of paracetamol. She was taken to an emergency section of a general hospital and was treated for the same. However, she as well as the family had not revealed about the death wishes or suicidal attempt to the doctors, fearing the medicolegal consequences and harassment of police. They had claimed that, because of intolerable abdominal pain, she had consumed some medications which were available immediately at home.
In the above scenario, which is quite common and of clinical significance in terms of early detection and treatment of depression and suicidal ideas, the current law aids the family in disclosing the actual problem and seeking immediate psychiatric help. Section 115 makes it a state responsibility to treat such patients which is a huge positive step.
| Changes in Admission and Discharge Procedure|| |
The act has brought all voluntary admissions of adult persons with mental illness under its purview. In recent times, there has been much awareness on mental illnesses, and public has started taking interest in mental health issues. The number of people seeking help for mental illnesses is slowly increasing. In the MHCA, even these voluntary admissions have been brought under the state supervision and should be under a registered mental health establishment (MHE). This may discourage admissions due to stigma, and the caregiver would have to carry the significant burden of caring for acutely symptomatic states. Here is an example of one such case scenario seen in daily clinical practice.
“Mr. A has bipolar disorder with comorbid substance dependence. He has been exercising his rights and says that he wants to be alone; he wants to stay all by himself. Family decides to support him and pays for his stay and maintenance. However, secondary to his substance use and antisocial personality issues, he gets into problems with public as well as law such as reckless driving, throwing stones, and accidents. Family members bail him out from the police station without registering any complaint. The family feels utterly helpless as they know that he is educated, refuses treatment, and currently considers himself “not ill”; however, nuisance to the public and police but yet dangerous to himself and the people around him.” Although the family is frequently called to support and bail him out in crisis, he is autonomous and fully capacitous, family has no roles specified in the act.
The patient's autonomy has been given at most prominence in MHCA. PWMI can question caregivers' or clinician's decision for admission. However, there are a sizeable number of patients, who are quite symptomatic but not dangerous and have capacity but resist inpatient care. If these patients refuse treatment, then the caregiver is in trouble as there are no current provisions to admit under MHCA unless the Mental Health and Recovery Board (MHRB) intervenes and MHE admits. No special provisions to consider psychosocial reasons or other multiple pressing real-life reasons for admission mentioned in this act.
Let us think of another case scenario. A patient with a diagnosis of psychosis refuses treatment and lacks capacity. In his AD, he has chosen a NR who is his distant relative. The NR gives consent for treatment, but he does not have money to pay for the treatment. Here, the act does not specify about the financial obligations of the patient but only talks on his right to make choices in his advance directive with no responsibility. Probably, it would have been a relief for the caregiver, if the financial responsibility was taken up by the state in the above kind of scenario of supported admissions.
Although the introduction of MHRB has been a positive step in protecting the patient's autonomy and rights during treatment delivery and care, we need to keep in mind the possibility of adverse effects on the doctor–patient–family relationship with entry of other legal experts. All treatment-related decisions are becoming legal and will impact the significant issues of clientele.
Section 119 gives blanket immunity against any suit, prosecution or other legal proceedings to the appropriate government or any other authority or board for anything done in good faith and intended to be done in pursuance of this act. At the same time, Section 108 talks of punishing people who are ill-treated PWMI and prosecute families, with free legal aid. It is very disheartening to see the discrepancy in treating the family members who sacrifice their time, energy, and resources in the care of PWMI.
| Advance Directive|| |
Mrs. M, a lawyer by profession, has an advance directive stating that in case of future mental illness, she can be treated only with medications and not with ECT or admission. This AD has been accepted by MHRB, registered, and is available online. Now, Mrs. M has been brought by her husband with a suicidal attempt secondary to imperative hallucinations as a part of paranoid schizophrenia. In this case, the NR or treating consultant can apply to MHRB to overrule the AD. A recent survey noted that the psychiatrists who worked primarily in private settings were troubled that this legislation placed an added onus of responsibility on them. The additional expenditure and time delays caused by getting approvals or overruling AD will be an important hurdle and burden to the family.
| Insurance|| |
Mr. A, a 45-year-old married gentleman, was admitted and treated at a psychiatry setup for severe depression for 14 days. During the time of discharge, Mr. A had an unusual request to the treating consultant. Mr. A and his wife had a health insurance policy which covered many disorders related to physical health. Hence, Mr. A wanted the diagnosis to be mentioned as a neurological one.
MHCA 2017 has made a revolutionary change by including mental illness in the list of illnesses covered by the insurance. This would obviate the need for the above kind of requests from patients and caregivers and decrease the financial burden on the family and facilitate treatment for all illness in the International Classification of Diseases. It is the state's responsibility to see to it that the above provision is implemented at the earliest in its true spirit of rights of patient
| Caring for Homeless People With Mental Illness|| |
MHCA 2017 ensures health care, treatment, and rehabilitation in the least restrictive environment, respecting the rights and dignity. This may superficially appear to be decreasing the family's burden in care giving. However, quoting from a recent report in the Wire, The Chief of Delhi Commission for Women, on a surprise visit to Asha Kiran, a government-run home for persons with mental disabilities in Delhi, found inhabitants living in extremely gross and inhumane conditions, in a severe case of human rights violation. Keeping such instances in mind, the state needs to be attentive toward regularly supervising government-run homes. It would have been better if the families were empowered by making provisions for day-care centers/sheltered accommodation/hostels where the patient would stay with the family and attend rehabilitation services.
| Children With Mental Health Problems|| |
A 12-year-old boy presented to a psychiatric facility with a history of multiple episodes of unresponsiveness for the past 2 months. Repeated evaluation and treatment by a pediatrician were of minimal benefit. The child was referred by the pediatrician, suspecting a psychological origin for the problems. An outpatient consultation revealed that these episodes were dissociative in nature. The secondary gain was absenteeism from school. Parents were distressed because the episodes had increased to 6–7/day and requested inpatient care.
Now, in the above scenario, the treating consultant would agree for inpatient care as the child requires a detailed assessment to evaluate for stressors, to perform environmental manipulation and appropriate psychological interventions. However, according to this act, the child would not get access to the psychiatric facility unless the parent makes an application to the medical officer. Following this application, the medical officer or mental health professional in charge of MHE may admit such a minor to the establishment, if two psychiatrists and one mental health professional or one psychiatrist and one medical practitioner have independently examined and conclude that the minor requires admission. A simple procedure with parental consent has been converted into a state-monitored tedious process. This would mean a very few parents would venture into this difficult path.
This act also specifies that, when a female child is admitted as a psychiatric inpatient, she cannot have a male caregiver, including her father, as the sole person staying with her. Although this is a welcome step in preventing any possible child abuse during the hospital stay, including the father in this clause might not be practical, because there are instances when the only single parent is the father or the mother has to take care of the younger sibling at home. It puts a big question mark on the family values deeply rooted in the Indian culture.
Section 21.2 says that a woman receiving institutional care shall ordinarily not be separated from her child if the child is below 3 years of age. This is a welcome initiative. In recent times, mother–baby units (MBUs) are being promoted from the viewpoint of a better mother–child bonding. The act would ensure that more MBUs would be created and maintained, which would be a great support for the family.
| Mental Illness in Persons With Physical Illness|| |
Mr. K is admitted for the treatment of hepatic encephalopathy in a general hospital setting. Within 4 days, he becomes medically stable. However, he still has withdrawal features and psychotic symptoms secondary to his alcohol dependence. Mr. K has no or limited capacity to make a decision. The treating physician is unsure of options.
In the above example, the act does not clearly define or give directions to address Mr. K's mental health-care needs. The act covers all centers where PWMIs are admitted including general hospitals. If the general hospital in which the above patient is being treated does not have registration as an MHE, the caregivers and treatment team are in a soup. From the viewpoint of the caregiver and patient's complete treatment, the act should have given clear-cut guidelines regarding mental health-care needs in general hospitals, which actually would have reduced stigma. This would also have benefited the category of patients with substance dependence which is a cause of great suffering for the families in India.
| Discussion|| |
In India, a country in which the majority of patients belong to rural background, the patient–doctor relationship still follows a paternalistic model. The new act emphasizes the patients' rights and, in doing so, doctors may opt to be more defensive and fearful in making clinical decisions, shifting the burden to the shoulders of the family members and patients.
Indian society places more value on the family as a unit versus personal autonomy. It is not uncommon to see families sacrificing their own pleasures when there is a need to care for a family member because of any kind of illness. All along, the families have cared for the patients with mental illness. However, the new act, in the enthusiasm of making itself patient centric and bringing out a legislation based on his/her rights, appears to have neglected the family completely, so much so that the word “family” hardly appears in the whole draft, and the emotional value of the family has been totally neglected. Family and the other care providers (like mental health professionals) appear to be seen as one who is ever ready to violate patient rights, and the clauses appear punitive in addressing the family's concerns. It also ironically discourages the families from taking up mental health care for want of simple admission procedures. This, in turn, will further increase the stigma, burden, disability, and homelessness. This will cause the families to seek unscientific treatments, approach native healers, and leave the patients in temples and other religious healing places which are easily accessible and unmonitored by any governmental agency, where several inhumane methods to cure the “spirit” are used. This may lead to a paradoxical violation of human rights of the patient in the long run and actually will question the very purpose of the patient-centric efforts of the act.
The act does not specifically address the issues related to marriage/divorce in PWMI. This is an area where the families of PWMI face multiple problems, and many a time, it is a difficult situation for the treating psychiatrist to convince either the family or the law about the actual scientific viewpoint.
The present act appears an ambitious one. Its provisions about rehabilitation, free treatment options, and universal accessibility of mental health services appear to be more idealistic, and to achieve these in reality in the near future is going to require a continuous flow of funds and adequate, strict supervision. In protecting the rights of the mentally ill, the clinical work and issues related to actual recovery from mental illness have taken a definite back seat. The clinicians will have to learn to use the act since they are the service providers. However, for the family members of PWMI and the general public to understand and utilize the law, it would take a long time to get familiarized with it. The excessive legalistic approach may actually lead to incomplete and unsatisfactory treatment of mental illness which would again mean a violation of patient's rights to get better with treatment, his illness, and symptoms come in way! Autonomy versus family-centered decision is one of the main connectors of differences between Western and Eastern societies. However, much of the MHCA 2017 appears to have been borrowed from European mental health legislation. Well versed with the Indian family structure and dynamics and working in the Indian community, it would be prudent to feel that, without suitable amendments to include the family's concerns, the present act would stand as an alien Western law enforced on Indian cohesive family dynamics.
The role of families and caregivers as primary stakeholders in supporting PWMI has to be recognized under the MHCA. In a country like India, where the collective goals of family are culturally considered at par with individual rights, a step to let a patient choose the line of treatment, his/her desires could be in conflict with the choices of the caregiver. This would put the family and the patient on opposite sides of the legal fence as adversaries and could even lead to the families being less willing to be proactive in the treatment of their wards. With increased caregiver burden, persons with mental illness may be abandoned. It is impossible to achieve adequate psychiatric treatment without family support. The emerging clientele of today seems to be largely composed of well-informed and highly rights oriented patients. They generally resist admissions and interventions, rendering the caregivers, mental health professionals, and law enforcement agencies ultimately helpless, thereby defeating the purpose of optimal treatment of persons with mental illness.
Qualitative studies are required from the family perspective to illustrate the hindrances that the patients' families are facing in getting treatment for psychological reasons. Now, such studies are possible only when the families know about the act. This is going to be important from two perspectives:First, this will make it easy to implement the act with its positive aspects. Second, the deficiencies from the carer's point of view will come into light. Based on these, suitable amendments can be made which would help in making the patient care better and protect the human rights of both the patient and the family members.
| Conclusions|| |
Although the new MHCA 2017 has been revolutionary in protecting patient's rights and has made certain procedures to help family members, it still needs to be amended so as to empower the family members to treat the mentally ill in the community. We need to foster and reinforce the strength of family support with appropriate checks whenever required. In the Indian setting, the strength of the patient lies with the strength of the family. Hence, it is vital to preserve family's proven role in the mental health of the patient.
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Conflicts of interest
There are no conflicts of interest.
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Dr. K S Pavitra
Sridhar Neuropsychiatric Centre, Rajendra Nagar, Shimoga - 577 204, Karnataka
Source of Support: None, Conflict of Interest: None