What do service users want? A content analysis of what users may write in psychiatric advance directives in India

doi:10.1016/j.ajp.2014.10.006

Asian Journal of Psychiatry

Volume 14, April 2015, Pages 52-56

https://doi.org/10.1016/j.ajp.2014.10.006 Get rights and content

Highlights

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No client used the PAD as an opportunity to refuse care.
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Most clients were willing to have a proxy decision maker to make decisions for them on their behalf.
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In most instances the proxy decision maker they wanted was a family member.

Abstract

Although psychiatric advance directives give service users control over their care, very few studies exist on the content of PADs. This paper aims to contribute to this evidence base by presenting the content of psychiatric advance directives in India.

Participants were 75 clients seeking outpatient care at a mental health services organisation in Tamil Nadu, India, who agreed to draft a PAD.

Most clients were comfortable with appointing a representative (usually a family member) to make decisions on their behalf during a period of decisional incapacity or relapse, were willing to accept admission to the hospital/clinic and take medication if required, wanted to have a trusted person to discuss their mental health problems. No client used the opportunity to outright refuse treatment.

This study highlights an important first step in improving the quality of mental health care by documenting user preferences for care in India. More in-depth research is needed to elicit rich descriptions of experiences of care and user-centred understanding of rights.

Introduction

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) has encouraged a shift from dominant models of guardianship to models of supported-decision making in a number of mental health laws worldwide. Central to the notion of supported decision making is Article 12 of the CRPD, which states that all persons with disabilities should be provided support, where needed, to exercise their legal capacity in all domains of civil, political and judicial life. This includes the right to make decisions about health care and treatment processes, and have them respected by professionals.

Psychiatric Advance Directive (PAD) is one tool to facilitate supported decision-making. PADs are a tool for recording and implementing service user preferences in advance of periods of decisional incapacity throughout the course of mental illness (Campbell and Kisely, 2009, Henderson et al., 2008). PADs can either be instructional (e.g. specify treatment and personal decisions while in a period of decisional incapacity) or elect a nominated representative (proxy decision maker) to take decisions during this period of incapacity. Furthermore, preferences can be expressed and articulated independently or via facilitator (typically a health worker or peer support worker). PADs can enhance dialogue between health care professionals, family members, and service users, improve treatment adherence and continuity of care, and reduce the likelihood of hospitalisation and coercive care (Elbogen et al., 2007, Jankovic et al., 2010, Srebnik et al., 2005, Swanson et al., 2006).

Globally, although a sizeable evidence base exists on the benefits and barriers to PAD implementation and use (Henderson et al., 2008, Shields et al., 2014) we know very little about the content of PADs (Srebnik et al., 2005), with only two studies conducted in the US (Amering et al., 2005, Srebnik et al., 2005) and one study in India (Kumar et al., 2012) which detail the content of PADs. Understanding the information provided in PADs is important for anticipating future service user needs, as well as for broader service planning. Furthermore, from the service delivery side, instructions articulated in a PAD may shape individual care, and patterns identified across PADs could shape or catalyse the need for adaptations/different services and policies (Srebnik et al., 2005).

India is one example of a LMIC currently undergoing mental health legislation reform. The revised Mental Health Care Bill (Ministry of Health, 2013) adopts a more rights-based approach to care and has made an explicit provision for PADs as a way to promote supported decision-making. The draft legislation provides for a PAD where a service user can (a) specify the type of treatment a service user may want (b) the type of treatment a service user may not want and (c) the person the service user wants to make decisions as a nominated representative (proxy decision maker).

However, as the reform is current, research on PAD implementation is scarce in India, given that it is a relatively new concept in both scientific and academic discourses. There have been two studies from the state of Tamil Nadu (Kumar et al., 2012, Shields et al., 2013), which have documented completion of PADs and unpacking the concept of PADs with service users. However, there has been anxiety amongst mental health professionals about PADs, including how the process of completing and using a PAD will work, whether it will become a barrier to care and treatment (Kala, 2013, Sarin et al., 2012). Doubts have also been expressed whether PADs are appropriate for the Indian service and cultural context.

In order to implement PADs in a contextually relevant way that is feasible for service users to demand and complete, additional evidence is needed to facilitate conceptualisation, operationalisation and application of PAD in India. It is unclear whether patterns exist in PADs, and if so, what direction these patterns point to. In an effort to build the PAD evidence base in India and within LMICs and to provide a voice to service users in care planning, the aim of this paper is to present the content of PAD created by outpatients in Tamil Nadu, India.

Section snippets

Design

This paper presents quantitative data from a study assessing the feasibility and utility of PADs, including the analysis of content of PADs documented by clients. Another paper (Shields et al., 2013) reported data from qualitative interviews (with a proportion of clients who completed the PADs and their carers) conducted before and after completing a PAD.

Study location

PADs were completed in outpatient clinics run by The Banyan, a non-profit mental health service organisation in Chennai, Tamil Nadu, India.

Results

Throughout a 3-month period, 83 clients were approached to complete a PAD, of which 75 clients agreed. The 8 clients who refused or could not complete a PAD where largely from urban areas (n = 7), female (n = 6), and could not complete a PAD either due to the severity of their mental illness at the time of request (n = 5) or were not interested (n = 3). There were no significant differences between service users who completed PAD versus those who did not complete a PAD. The majority of PAD completers

Discussion

This paper aimed to explore what service users in India may write in psychiatric advance directives. Several findings have important implications for clinical practice and for future research. First, this study corroborates the findings from studies on the content of PADs in India and the United States showing that people with severe and persistent mental illness can articulate their treatment and care preferences in the format of a PAD (Kumar et al., 2012, Srebnik et al., 2005). Second, within

Funding

The project did not receive any external funding.

Contributors

All authors have made substantial contributions to all of the following: (1) the conception and design of the study, or acquisition of data, or analysis and interpretation of data, (2) drafting the article and revising it critically for important intellectual content.

Conflict of interest statement

SP served as a technical consultant to the Ministry of Health and Family Welfare in drafting the Mental Health Care Bill which is currently in Parliament.

Ethical statement

We received local ethical approval from the external research review committee for The Banyan. Consent to participate in the interviews and to complete a PAD was obtained and recorded from every participant either through signature on informed consent forms, or by thumbprint. To ensure confidentiality during the data analysis, names were replaced with unique ID codes. Furthermore, identifying factors associated with the clients were omitted from the data analysis and from this paper. Patient

Acknowledgements

We are extremely grateful to the clients, carers and health care workers who participated in this study.

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Many countries embarked on reforms of mental health law in the wake of the Convention on the Rights of Persons with Disabilities. These reforms have had varying levels of success. This paper considers the experience of consumers in the Victorian mental health system, drawing on an evaluation that asked consumers and clinicians about their knowledge and experience of rights under the Victorian Mental Health Act, 2014. The data show that consumers were not informed of their rights, were not involved in decisions about treatment, were not able to access safeguards, and could not exercise their rights. The explanations for this include limited staff time, unclear delegations of responsibility, a lack of knowledge, training, and support for rights, and a preference for ‘best interests’ approaches. The paper identifies tangible reforms that would maintain rights for consumers, including competent refusal of treatment, legislative and regulatory reforms, and training and resourcing. Consumers in this study found that the rights-based framework in the Mental Health Act, 2014 had such an insignificant effect on clinical mental health practice in Victoria that their rights appeared to be illusory.
Factors influencing advance directives among psychiatric inpatients in India
2018, International Journal of Law and Psychiatry
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Positive expressed wishes in the Advance Directives showed a positive association with several severe mental illnesses such as Bipolar Disorder and Schizophrenia, confirming findings from previous randomized controlled trials with cohorts from high income countries. The findings also supported the findings of a qualitative study into patient's preferences by Pathare et al. (2015). In line with the latter Indian study, compliance and treatment adherence were far better in our sample than in many high income countries, and ECT was favoured less.
Advance directives are documents stating treatment preferences in case of future lack of decision making capacity. In India, as in many other countries, legislators advocate Psychiatric Advance Directives (PADs), while evidence on its use is limited. This study examined factors influencing PADs by gathering inpatients perspectives on PADs at discharge and investigating patient characteristics associated with the expression of treatment wishes in PADs.
We conducted a hospital based descriptive study in Bangalore. 200 patients were included. The Mini International Neuropsychiatric Interview, CGI-S and CGI-I (Clinical Global Impression scales), the Insight Scale-2, and an Illness insight assessment were completed within 3 days of admission. We used the Bangalore Advance Directive Interview (BADI) to assess attitudes towards PADs. 182 subjects were reassessed within 3 days of discharge, along with an interview on their perspectives on PADs.
67% welcomed the need for PADs in India. 95.6% made their own PADs. 80% followed their doctors' advice in their PAD. Subjects lacking insight or remaining symptomatic at discharge opted significantly more often against ECT, antipsychotics, and inpatient care. Linear regression showed that low socio-economic status, unwillingness to stay in hospital, and having received ECT before were inversely associated with the expression of treatment wishes in PADs.
This study's findings are relevant for India and Western countries alike while generating legislation including patients' perspectives. A majority of patients favoured PADs. Absent insight, severe psychopathology and incomplete recovery may negatively influence the way PADs are completed. Therefore, clinicians must assess patient's capacity to formulate PADs carefully, as capacity may significantly influence patients' views. The timing of when to formulate one's PAD within the illness process may be essential.
Reversing hard won victories in the name of human rights: A critique of the General Comment on Article 12 of the UN Convention on the Rights of Persons with Disabilities
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The UN Convention on the Rights of Persons with Disabilities (CRPD) is a major milestone in safeguarding the rights of persons with disabilities. However, the General Comment on Article 12 of the CRPD threatens to undermine critical rights for persons with mental disabilities, including the enjoyment of the highest attainable standard of health, access to justice, the right to liberty, and the right to life. Stigma and discrimination might also increase. Much hinges on the Committee on the Rights of Persons with Disabilities' view that all persons have legal capacity at all times irrespective of mental status, and hence involuntary admission and treatment, substitute decision-making, and diversion from the criminal justice system are deemed indefensible. The General Comment requires urgent consideration with the full participation of practitioners and a broad range of user and family groups.
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Psychiatric Advance Directives (PADs) have been incorporated into India's Mental Health Care Bill, 2013. This is the first time any form of Advance Directive stands to receive legal sanction in India. PADs have numerous theoretical and empirically tenable therapeutic and financial advantages. Western experiences have shown high acceptance for the concept among psychiatric patients, and illustrated that most stable patients with severe mental illness retain the capacity to frame PADs consistent with community practice standards. However active psychopathology does impair this capacity, and therein, current subjective assessments of competence performed by Physicians without objective instruments are often inaccurate. Though PADs champion patient autonomy, when applied and studied, they have shown little significant advantage—there is currently not enough data to support evidence-based universal recommendations for PADs. PADs as incorporated into the Mental Health Care Bill model on existing Western statutes, and though many of the strengths of earlier systems have been subsumed, so have several of the shortcomings. The risks, benefits and applicability of PADs in India are complicated by the social re-calibration of patient autonomy, mental-healthcare delivery system weaknesses, and the relatively peripheral role the Psychiatrist is mandated to play in the entire advance directive process. Treating patients within the framework of their pre-stated wishes will be a much more intricate and arduous task than most of modern Psychiatric practice in India, but the difficulties, obstacles and inevitable failures encountered will provide evidence of the delivery system's weaknesses and thereby contribute to its strength.
Psychiatric advance directives in Switzerland: Knowledge and attitudes in patients compared to professionals and usage in clinical practice
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Citation Excerpt :
Research revealed positive effects of PAD on the patients` clinical course (Campbell & Kisely, 2009; De Jong et al., 2016; Elbogen et al., 2007; Henderson et al., 2004; Henderson et al., 2009; Khazaal et al., 2008; Khazaal et al., 2009; Swanson et al., 2008; Wilder et al., 2010). Also, most PAD written during a mutual exchange of patient and therapist were shown to be consistent with standards in clinical practice and the instrument was rarely used to refuse all treatment (Gowda et al., 2018; Henderson et al., 2009; Pathare, Shields, Nardodkar, Narasimhan, & Bunders, 2015; Reilly & Atkinson, 2010; Srebnik et al., 2005; Srebnik & Russo, 2007; Swanson et al., 2006). Nevertheless, although being more skeptical than the other groups, psychiatrists had positive attitudes towards PAD in >60%.
Psychiatric advance directives (PAD) were shown to be effective in the reduction of coercion and strengthening of the patients` autonomy. Therefore, the Swiss legislation was revised and stipulates that PAD must be taken into account during involuntary hospitalization. This study aimed to analyze knowledge on and attitudes towards this instrument in patients and healthcare practitioners and their usage in clinical practice.
We developed a structured questionnaire and included patients (n = 110), psychiatrists (n = 205), psychologists (n = 85), nurses (n = 268) and peers (n = 16) to rate their knowledge on and attitudes towards PAD. We registered the existing PAD in patients and peers. The response rate varied between 17% (nurses), 19% (psychologists) 21% (psychiatrists), 33% (peers) and 56% (patients).
Only 7% of the participating patients had a PAD. Compared to the other groups, patients had the least knowledge on PAD. Psychiatrists were significantly more critical towards PAD. Concerns that PAD impede necessary and adequate treatment, restrict professionals and result in conflicts between patients and HCP were most frequently named as reason for critical attitudes.
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View full text

What do service users want? A content analysis of what users may write in psychiatric advance directives in India

Highlights

Abstract

Introduction

Section snippets

Design

Study location

Results

Discussion

Funding

Contributors

Conflict of interest statement

Ethical statement

Acknowledgements

Shared decision-making preferences of people with severe mental illness

Psychiatr. Serv.

Psychiatric wills of mental health professionals: a survey of opinions regarding advance directives in psychiatry

Soc. Psychiatry Psychiatr. Epidemiol.

Psychiatric advance directives: qualitative study of informed deliberations by mental health service users

Br. J. Psychiatry

Advance treatment directives for people with 373severe mental illness

Cochrane Database Syst. Rev.

Effectively implementing psychiatric advance directives to promote self-determination of treatment among people with mental illness

Psychol. Public Policy Law

What service users with psychotic disorders want in a mental health crisis or relapse: thematic analysis of joint crisis plans

Soc. Psychiatry Psychiatr. Epidemiol.

A typology of advance statements in mental health care

Psychiatr. Serv.

Advance statements in adult mental health

Adv. Psychiatr. Treat.

Time to face new realities; mental health care bill-2013

Indian J. Psychiatry