|Year : 2020 | Volume
| Issue : 2 | Page : 114-118
Perspectives on advance directives in psychiatric practice: A qualitative study from Kerala, India
Chikku Mathew1, Deenu Chacko1, PV Indu2, K Vidhukumar1
1 Department of Psychiatry, Government Medical College, Ernakulam, Kerala, India
2 Department of Psychiatry, Government Medical College, Kozhikode, Kerala, India
|Date of Submission||02-Apr-2019|
|Date of Decision||10-Jun-2019|
|Date of Acceptance||01-Sep-2019|
|Date of Web Publication||27-Jun-2020|
Dr. K Vidhukumar
Department of Psychiatry, Government Medical College, Ernakulam, Kerala
Source of Support: None, Conflict of Interest: None
Context: Advance directive (AD) is being used in psychiatric care in developed countries for the last two decades. Although the AD is bound to offer patient autonomy and beneficence, evidence for its effectiveness and feasibility are limited. By the enactment of the Mental Health Care Act, 2017, India is going to implement AD. Aims: This study aimed to find perspectives on AD in psychiatric practice by different stakeholders in Kerala, India. Subjects and Methods: A qualitative study using focus group discussion and in-depth interview was done among mental health service users such as patients and carers, providers such as psychiatrists, clinical psychologists and psychiatric social workers, and advocates. Transcribed information was coded by R package for Qualitative Data Analysis, a free software. Results: The predominant themes identified were freedom of choice, issues of documentation, suitability in a crisis, apprehension about future care, mental capacity at the time of making the AD, issues about nominated representative, limitations in the exercise of treatment options by doctors, and the possibility of defensive practice in psychiatry. Half of the patients supported the AD, whereas the other half did not. Advocates agreed that patients should be given the freedom to choose and hence supported the AD. Some mental health service providers favored AD, whereas others were apprehensive. Conclusions: Although ADs help patients in preserving their autonomy, many uncertainties, practical issues, and legal issues are to be tackled for its effective implementation.
Keywords: Advance directive, autonomy, mental capacity, nominated representative, qualitative study
|How to cite this article:|
Mathew C, Chacko D, Indu P V, Vidhukumar K. Perspectives on advance directives in psychiatric practice: A qualitative study from Kerala, India. Indian J Soc Psychiatry 2020;36:114-8
|How to cite this URL:|
Mathew C, Chacko D, Indu P V, Vidhukumar K. Perspectives on advance directives in psychiatric practice: A qualitative study from Kerala, India. Indian J Soc Psychiatry [serial online] 2020 [cited 2020 Jul 12];36:114-8. Available from: http://www.indjsp.org/text.asp?2020/36/2/114/288106
| Introduction|| |
Recently, there has been an increased focus on the rights of patients to make decisions on their treatment. Advance directive (AD) is a tool that could offer the same. Even in developed countries, AD had been used in mental health, only for the last two decades. AD is a legal document that allows a patient to consent to or refuse future mental health treatment, if an incapacitating psychiatric illness occurs at a later date, by documenting advance instructions or appointing a surrogate decision maker. Western experiences have shown mixed responses for AD among psychiatric patients. It had been illustrated that most stable patients with severe mental illness retain the capacity to frame ADs consistent with community practice standards. However, evidence for an AD in terms of effectiveness and feasibility are limited.
Advantages in completing an AD include promotion of the person's autonomy and beneficence while minimizing harms. AD minimizes the burden on family members when crucial decisions are needed to be taken. It also reduces the need for costly futile treatments and may ease the financial burden on the family. Maître et al. reported that patients showed a strong interest in creating an AD and a high level of satisfaction when using it. As per their report, patients felt that they have more control over their mental health problem and are more respected and valued as a person.
Studies about AD in India are few. Such a tool would have to face several hurdles when implemented in a country that espouses family rights over the individual rights of the patient. However, it has been proven that mentally ill patients can understand the concepts of an AD and can plan so, in the Indian context. Implementation of ADs as part of the Mental Health Care Act (MHCA), 2017, in India is likely to raise many questions; thus, it is crucial to examine the perspectives on AD among various stakeholders including users of mental health services, such as patients and their relatives, mental health service providers such as psychiatrists, clinical psychologists and psychiatric social workers, and advocates.
| Subjects and Methods|| |
A qualitative study was conducted within a framework of the interpretive method using the mixed approaches of grounded theory and phenomenology. The primary investigator was a postgraduate in psychiatry with 2 years of training in psychiatry, and the second investigator was a consultant with 10 years of experience in psychiatry. The third and fourth investigators were consultants in psychiatry with more than 20 years of experience in the field, with expertise in research and have undergone formal training in qualitative research. All the investigators cooperatively prepared an interview guide that covered the legal, social, and ethical aspects and the feasibility of ADs. Focus group discussions (FGDs) and in-depth interviews (IDIs) were the research methods used for the study. Ethical approval was obtained from the institutional ethics committee prior to the study.
FGDs were conducted on:
- Patients – About six to eight patients were recruited purposively for each FGD after obtaining informed consent. Those inpatients whose symptoms were under control, who were above 18 years of age, and those who were accompanied by a family member were chosen as participants. We excluded patients with intellectual development delay and dementia from the study. Two such FGDs were carried out on patients of a government medical college and one in a private psychiatric hospital
- Relatives – Four groups consisting of eight to ten participants, two each from private and government hospitals, were considered for the FGDs.
The sessions continued until the information became redundant. All sessions were moderated by the principal investigator. Each session lasted 30–45 min.
IDIs were carried out on two patients, two relatives, two advocates, two psychiatrists (private and government sectors), one psychiatric social worker, and one clinical psychologist. The sessions were conducted by the principal investigator in their respective clinics or offices. Each session lasted 30-45 min.
All the FGD and IDI sessions were audio recorded, transcribed, and translated to English. Written informed consent was obtained from all the participants before participation. The data were managed using the R package for Qualitative Data Analysis which is the qualitative component of free software R version 3.5.2 (R foundation for statistical computing, Vienna, Austria).
| Results|| |
Three FGDs were conducted among twenty patients, and four FGDs were conducted among 36 caregivers. Thirteen male and seven female patients participated, in which 11 (55%) belonged to the below poverty line (BPL) class and 9 (45%) belonged to the above poverty line (APL) class. A total of 36 caregivers – twenty males and 16 females – belonging to both BPL (58.3%) and APL class (41.6%) were included. Most of the patients belonged to the 30–50 years' age group, and the majority of the relatives were aged above 50 years.
The major themes identified were:
Freedom to choose
During the FGDs, about half of the patients expressed their need for control over their illness and the need to respect their autonomy. There was agreement among a few patients that AD can empower persons with mental disorders to have a say in treatment decisions; this can help decrease coercion; increase treatment collaboration, motivation, and adherence; and help avoid conflict over treatment. These were highlighted by the psychiatric social worker as well. The ethical principle of autonomy will supersede the doctor's decision in the court, according to the advocate.
“A patient with mental illness during the exacerbations may not be able to decide upon treatment. Hence writing an AD will make sure that my opinion will also be sought for. It will respect my individuality and freedom” (patient, FGD3).
Some patients also expressed the view that a proper document would help them in communicating with others that he or she is suffering from mental illness.
“In my case, many have commented that the illness is because of my way of thinking. So, this idea of documentation can make people understand that it's a mental illness that requires treatment.” (patient, FGD2).
Applicability in a crisis
Responses from patients and relatives also highlighted that the applicability of AD might be enhanced in a crisis as it was considered as an appropriate tool to reduce tension and conflicts among patients, family members, and health professionals. It may help in sharing responsibilities in the clinical practice. However, mental health professionals were ambivalent regarding the utility of AD in a crisis.
“Invoking an advance directive in a crisis situation has to be done with caution. It can invite unnecessary legal issues and ethical problems” (psychiatrist 1, IDI1).
Apprehension on the future implementation of advance directive
Many patients did not want to expect the potential exacerbation or relapse of their illness and did not want to make an AD. Having an illness is itself a taboo and hence, they were not eager about writing the same as a document.
“I do not want to go into a discussion on AD which will mention my future illness, as the thought of a next episode itself annoy me. Hence writing a document about the same is something I don't want to do” (patient, FGD1).
Many relatives opined that the impact of illness will be unpredictable and complex that it cannot be judged in advance. Thus, what was written in the AD may not suit the future needs of the patient. During the discussion, the relatives felt that the treatment chosen by the patient can be imprecise. Patients cannot predict in advance what medical decisions they would want in future. The relatives were also worried about the potential preferences made by the patient which could either be inaccessible or financially burdensome.
Nearly 50% of the patients were apprehensive about the details in the AD. They were worried whether such predetermined suggestions can be useful in future. They were also worried about the contents which may be used against them. They also preferred to leave their treatment decisions to the doctor who is the authority in the field.
“Even if the treatment is coercive or includes electro convulsive therapy, the doctor will always act in the best interests of the patient” (patient, FGD2).
Mental capacity at the time of making the advance directive
The legal personnel acknowledged that AD by default considers that everyone has the capacity. However, patients are marred by vagaries of diseases that can impair their insight and capacity. How, when, and who will assess the capacity of the patient is not clearly mentioned in the MHCA. It is unclear how the system ensures that using ADs is not enforced upon the patient.
Various stakeholders also discussed the importance of family in our culture and how AD undermines it by placing a nominated representative (NR). Family members of patients and health professionals play an important role regarding a patient's treatment. The family provides moral and emotional support to the ailing person with mental illness. Hence, bringing in an NR, other than a family member, would thwart the familial support. The family may disown the patient which will have long-lasting consequences, patients may wander and overcrowd the mental institutions, and so on.
Narratives related to the role of the NR also reflected the apparent inability of NR to accurately represent the preferences of the patient. The decisions of the NR on behalf of the patient may be complicated by conflicts of interests or their own treatment preferences.
However, some of the patients supported NR and narrated that they would nominate their immediate family members as NR because such a step would ensure that their loved ones will be with them at their time of need.
“I like this concept. I will write that I would like to have my mother as my NR because I will feel more secure. I trust her and I know that she will handle me better than anyone else. So, I will keep her as my NR” (patient, FGD3).
In the present study, psychiatrists were concerned about the practical issues that were hobbled by uncertainty. In an emergency, when it is needed to immediately handle the patient or to resuscitate, there may be some unavoidable delay while the AD is assessed.
Various stakeholders were unanimous in agreeing that there are many practical concerns regarding the use of AD, for example, awareness, utilization, fear of abuse, and keeping track of AD so that it is readily available when needed. Setting up of mental health review boards in every district will be an issue of concern in India where such resources are sparse in rural settings. There is a possibility of ADs being restricted to urban elites who have access to services, information, and resources to execute them.
“Implementation of advance directive is not practical, there are no resources available in our country for the same. Poorer states will not be able to implement it” (relative, FGD2).
The discretionary power of the mental health service provider
In the present study, doctors worried that AD can curb the discretionary power of the mental health service provider. The doctor chooses the best treatment out of the given options to see his/her patient lead a better life. However, with an AD, his/her options are very limited, and his/her discretionary power is narrowed down. A doctor is supposed to abide by the AD if he/she considers it as valid. If a doctor is not satisfied that the AD is valid and applicable, then he/she can act in the best interests of the patient. The doctor should be able to justify his/her reason, and proper documentation is essential.
When a condition is treatable, it is distressing for a doctor to deny treatment, but liability would follow if the doctor fails to abide by the AD. No liability would follow if the doctor withholds treatment as per the patient's AD, provided that the AD is valid. Doctors have the primary responsibility to protect patients from harm when they are the most vulnerable. However, with an AD, doctors are pulled into a tussle to discern the exact wishes of the patient about his/her health care. When the validity of an AD is doubtful, the doctor will have to consult the family or may have to approach the court regarding the validity. Going through these procedures is time-consuming, would delay the treatment process, and is burdensome. Hence, a lot of defensive practices would arise, which will harm patients and their relatives. It may add to the economic burden on the patient.
“A patient who comes with an AD will be viewed with caution. A lot of defensive practice would set in. If there is an advance directive, giving treatment is a documented liability. The private sector will suffer” (psychiatrist 2, IDI).
| Discussion|| |
This is a qualitative study undertaken using the mixed approaches of grounded theory and phenomenology. Patients gave a mixed opinion about the AD. While half of the patients argued for the need for autonomy, thus favoring AD, the other half of the patients left their treatment decision to the doctor's discretion. Some patients also did not want to write an AD because they felt that their illness was a taboo and writing an AD would exacerbate it. Majority of the relatives were against AD. This finding had been supported by earlier studies. However, another study had shown that carers are supportive of AD.
In this study, psychiatrists were apprehensive about the utility of AD. Studies relating to perspectives among psychiatrists could not be found in literature. However, there are studies among general physicians on AD. A study among Canadian physicians disclosed that only 19% of physicians would discuss AD issues in general, while more than half of them reported that they would not comply with the patient's AD. In a study done among physicians in Lithuania, health professionals preferred to uphold the principle of beneficence rather than respect for patient's autonomy. The psychiatric social worker and the clinical psychologist shared good opinions regarding AD, but no literature could be traced in this regard.
Patient's autonomy, the central principle of Article 12 of the United Nations Convention of Rights of Persons with Disabilities, had been recognized by patients, relatives, and mental health professionals in the study. The documentation about mental illness and future treatment was welcomed by patients. Responses from patients and relatives also highlighted the utility of AD in crisis. Probably, this highlights the need for a crisis plan card/statement as part of the AD. It should be considered whether a joint crisis plan is part of the AD in which mental health service user/families along with an expert outside the treatment team give explicit directions during a future psychiatric crisis through shared decision-making. Unexpected response from the patients was the phenomenon of not wanting to think about one's illness even when the possibility of AD is contemplated. We could not find any reference to it in literature. It emphasizes the need for facilitation in the form of support and psychoeducation while making an AD. The assessment of mental capacity at the time of making an AD is a thorny issue. Some standardized measures for the assessment of mental capacity to make AD, setting time limits for invoking AD, etc., should be considered while implementing an AD in the field of mental health. Moreover, it is suggested that the facilitated AD could make the AD more accurate.
What emerged from the opinion of the stakeholders, especially the advocates, is that the judicial and legal status of AD is powerful, provided it is valid. Even the option of no treatment by the patient should be respected. Overriding an AD must be proved to in the best interest of the patient and according to the existing standards of care. According to the psychiatrists, AD compromises the discretionary power of the mental health provider. They are also afraid that a psychiatric AD (PAD) may lead to defensive practice. All stakeholders were skeptical of the logistics, access, and equity of the implementation of PAD. Previous studies report such concerns.
The findings of the study should be interpreted in light of certain strengths and limitations: the strength is that this study is the first of its kind done so far in the country. As the study had relied on translated information, concepts in the regional language when converted to English may not bring out the true essence. Second, the study is restricted to the state of Kerala; thus, a generalization of the results to the rest of the country may not be possible.
| Conclusions|| |
AD is an important step toward respecting the autonomy of the mental health service user. However, many practical issues need to be sorted out before its implementation. Mental health service users should get adequate information about mental illness and its treatment. Otherwise, AD will be written out of ignorance, and it will be a threat to the patient and the society. Awareness programs about AD must be conducted among the public, psychiatrists, and lawyers. The need for a crisis card as a part of the AD has to be considered. Proper measures to assess the mental capacity of the patient before writing an AD should be incorporated. There should be guidelines for deciding the validity period of an AD. The effect of facilitating the AD should be examined in further studies.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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