|VIEWPOINT/PERSPECTIVES (THEMESECTION: MENTAL HEALTH CAREBILL, 2013)
|Year : 2015 | Volume
| Issue : 2 | Page : 119-122
The curious case of the advance directive in psychiatry
Consultant Psychiatrist, Sitaram Bhartia Institute of Science and Research, New Delhi, India
|Date of Web Publication||6-Jan-2016|
Sitaram Bhartia Institute of Science and Research, New Delhi
Source of Support: None, Conflict of Interest: None
As discussions around the Mental Health Care Bill 2013 gain pace, one aspect of the bill, which is the Advance Directive, has perhaps not been discussed enough. The present essay is an attempt to explore different aspects of the advance directive in psychiatry, to understand the implications better. The article attempts to look at the conceptualization of the advance directive, questions regarding implementation, and possible unintended consequences. In doing so, it interrogates the larger question of ideology that drives the concept of the advance directive in psychiatry.
Keywords: Advance directives, mental health legislation, philosophy of psychiatry, psychiatry and society
|How to cite this article:|
Sarin A. The curious case of the advance directive in psychiatry. Indian J Soc Psychiatry 2015;31:119-22
The law is a blunt instrument. It is not a scalpel. It is a club. If there is something you consider indefensible, and there is something you consider defensible, and the same laws can take them both out, you are going to find yourself defending the indefensible.
As we debate the various aspects of the proposed Mental Health Care Bill (MHCB) 2013, it may be appropriate to reacquaint ourselves with the different aspects of the bill. One of the rather important clauses of the MHCB is the provision for advance directives.
In a recent New York Times (NYT) article titled “The Trouble with Advance Directives,” the author Paula  talks about the difficulties faced by the elderly in implementing their wishes. An advance directive is a document prepared by a person in advance for a future period in which they may be unable to express their wishes regarding health care. Traditionally, advance directives have been used for what are called “end-of-life” crises, where it is anticipated that the person may be unable to express his or her desire or preference. What the NYT piece describes are the difficulties that may ensue when one attempts to operationalize advance directives. What the author does not do is to raise the primary question as whether the concept of an advance directive is a good or a bad one. It takes as a given, the fact that this is inherently a good thing, and that it needs to done.
In this article, we are going to question that basic premise.
What has happened is that we have moved the domain from end-of-life crises to psychiatric illness. While questions have been raised about the fact that even in the former the picture is not as simple as portrayed, when we talk of psychiatric disorders, new levels of difficulty arise.
Advance directives in psychiatry have traditionally been of two types:
- The instructional directive: This has also been called the “Living Will”, and essentially is an articulation of a persons desire of the way that s/he wishes to be treated in the case of future incapacity. The way that the advance directive in psychiatry differs from end-of-life situations is that in the latter condition, the person may be unable to express wishes, while in the former what the person says may be contrary to what was expressed earlier. A rather ingenious “Ulysses Clause” has been mooted to get around this difficulty, based on the legend of Ulysses and his instructions to his crew to circumnavigate the island of the Sirens. In the legend, Ulysses asks his crew to put beeswax in their ears so that they do not hear the seductive song
- The proxy directive: This essentially is the nomination of a proxy or a representative who is then entrusted with the responsibility of decision-making for the period of anticipated incapacity. In more conservative societies, this has traditionally been the role of a family member, who has been considered the “guardian” of the person with mental illness. The difficulty arises when either there is no available family member, or where the family member does not necessarily have the best interests of the individual at heart, or even when the best interests of the family members and that of the individual do not coincide. What the proxy directive then does is to empower the individual, or to give “agency” to the individual to choose a person as a “nominated representative” to make decisions on his/her behalf.
Thus, the main aspects of the psychiatric advance directive (PAD) can be summarized as:
- This is essentially a directive made by an individual during the periods of “capacity” for periods of anticipated “incapacity.” The difficulty with this clearly lies in determining when capacity exists and when it does not
- From the time, the idea was suggested by Szasz, the PAD has been an attempt to reconcile the concept of client autonomy with that of the need for involuntary treatment.
The question really is to ask how effectively it has been able to negotiate this rather tricky terrain.
While much has been written about the advance directive in the West,,, and some in India,, at least some of the writing approaches it from an ideological position. Thus, we tend to think of it in rather simplistic ways. “If this gives autonomy to the individual, it must necessarily be a good thing,” or, “If it reduces the importance of the family in traditional societies, this cannot be a good thing for a society such as India.” The other commonly espoused position is that for a third world country such as India, a complex concept like that of the advance directive is not something that we are ready for, either in terms of the psychological sophistication of our patients, or the resources that we have to make the concept workable.
In this author's opinion, none of these positions is completely valid.
Let us begin with the questions of ideology. The position that the concept of advance directives empower individuals is fairly difficult to argue against, and should not be the subject of the debate. The question perhaps should be - what is really the best way to do this?
If we rephrase the question, it will read something like this:
While we are agreed that the individual should have agency, is the route to that agency through the legal tool of the advance directive, or are there other alternatives?
In the management of psychiatric disorders, an understanding of the fact that recurrences and relapses can happen is an essential part. The concept of the advance directive is an attempt to see in what way that possible recurrence can be managed better. It is in this pursuit that it has become an almost de facto position that the PAD is the only way to go, and increasingly, governments, led by influential policy makers, have started to urge the use of the advance directive as a legal tool. India, in that sense, is one of the latest entrants on this stage, with the advance directive being an important part of the MHCB 2013.
What gets side lined in this process is the small but rather resonant voice of what I will call the counter narrative.
Fagerlin and Schneider in 2004 argued that even in end-of-life crises, the living wills do not reflect accurately patient autonomy. They write: “In pursuit of the dream that patients' exercise of autonomy could extend beyond their span of competence, living wills have passed from controversy to conventional wisdom, to widely promoted policy. However, the policy has not produced a result and should be abandoned.”
In a well-argued essay, they talk about the difficulty that people find in making complex medical decisions when competent, the difficulty in anticipating future decisions, the difficulties in articulating these, and finally, the difficulties when future proxy representatives and medical service providers interpret these articulations. They end with the rather pithy comment: “In social policy as in medicine, plausible notions can turn out to be bad ideas. Bad ideas should be renounced.”
What we must bear in mind is that here the authors are talking about the relatively less complicated area of the advance directive in terminal life situations. When we speak of the advance directive in psychiatric illness, we add another layer of complexity to this. Furthermore, to be borne in mind is the fact that to date, India does not have a provision for the usage of advance directive in end-of-life situations, so contemplating their use in mental illness situations may perhaps be a trifle premature.
Moving on to the use of the advance directive in psychiatry, an oft-quoted but perhaps under-appreciated paper is the Cochrane Review meta-analysis by Campbell and Kisely in 2010. What this paper highlights, and I think this is an important point, is that the advance directive is not one unitary concept. The paper unequivocally concludes that with the present state of knowledge, it is not possible to recommend the use of the advance directive simply due to a lack of supportive data.
When we “unpack” the concept of the advance directive, what emerges are again the fact that what masquerades as one is actually a plethora of beasts. Hence, while crisis cards, joint crisis plans, and advance treatment plans may all be clubbed under the broader rubric of the advance directive, they actually constitute very different things, and perhaps these aspects need to be recognized.
Furthermore, the extent to which legal aspects enter the discourse is one, which to my mind, is the factor that may perhaps play a larger role than we understand.
We come next to the argument that in India patients will lack the psychological sophistication or the resource to write the advance directives.
I will here draw your attention to two recent publications., Both, coincidentally from Chennai in Tamil Nadu, are about the experience of the advance directive in India, and are being used as evidence to the fact of the effectiveness of the advance directive in India. However, what needs to be understood here is that what is described in both these publications is the effectiveness of the writing of the advance directive, not the implementation of the advance directive. Furthermore, what both publications talk about is the process of making advance treatment planning feasible, as a statement of agency of the individual. The fact that the individual see, this as a beneficial exercise is a clear recognition of the usefulness of this process. What both these publications do show is that in the relatively low resource settings that they are based on clients do have the capability and psychological sophistication to be part of the treatment planning process. However, what needs to be clearly acknowledged here is that this process has little to do with the legal provision that is the part of the MHCB 2013. What emerges here is the fact that it is clear that it is beneficial for the individual to be the part of the planning of anticipated future treatment. The use of legality to enforce that process is, however, another question altogether.
The concerns about using advance directives as a legal tool rather than a clinical tool is exactly this. When conversations about planning for future difficulties happen, this cannot but be a good thing. When we use the law to mandate this, all the concerns about “blunt instruments” come into play. What is indeed ironic is the fact that while all the stakeholders in this space agree that the law is a blunt instrument, and not necessarily the best method for ensuring change, what is happening here, is that concerns driven by ideology are in a sense, dominating discourse.
If one is to consider the evidence of the effectiveness of the legal implementation of the advance directive, then the fact emerges that there is very little and perhaps none. The available literature seems to focus on the belief that since this sounds such as a good thing, it must be a good thing, and, therefore, it is tantamount to heresy to question that belief, even if it is unsupported by data.
The fact of the matter here is that there is a small but substantial body of the evidence that shows that the implementation of the advance directive may actually do the reverse of what it is intended to do. Hence, while it is intended to grant the individual autonomy while facilitating treatment where required, what it may actually do is to complicate many things.
An interesting case is that of Hargrave versus the State of Vermont, where Nancy Hargrave had prepared an advance directive that mandated that she should receive no treatment. When she did, in fact, develop a psychotic episode, which meant that she had to be admitted to a psychiatric hospital, she could not actually be treated, giving rise to a tricky legal situation. This situation, in turn, has led to a large discussion on when and how the advance directive can be overridden. The debate about when and how PADs can be overridden has in itself created a piquant scenario, causing Swanson et al. to comment: “The new PAD statutes contain a large contradiction: Among the provisions of these 'let the patient decide' laws are exceptions, which, in effect, render PADs as 'let the doctor decide after all' (or, perhaps more accurately, 'let the doctor decide whether the patient gets to decide').”
Furthermore, raised is a hypothetical situation that anybody familiar with mental illness will understand. In the situation of a person who refuses psychiatric treatment because of the development of say, tardive dyskinesia due to the conventional antipsychotic medication, the writing of an advance directive refusing treatment may not be particularly surprising. This, however, does not factor in the possibility of different treatments that may be available later, that may not necessarily be attendant with the same risks. In this situation, following the advance directive of the refusal of treatment may perhaps be a travesty of the principles of natural justice, and highlights some of the complexities associated with the concept.
Specifically in the Indian context, in the MHCB 2013, the provision regarding advance directives is constructed so that any directives regarding no treatment has to be approved by the proposed Mental Health Review Board. It would not be difficult to see that in this context, where the boards will be both new and tentative, it is actually, extremely unlikely that any advance directive regarding treatment refusal will be registered. This is, in itself, a negation of the principle of autonomy.
In the West, where the concept of PADs emerged as a logical extension of societal dialogue regarding individual autonomy and the US Patient Self-Determination Act, the process is not difficult to understand. A similar process has happened in the United Kingdom and some European countries, where the concept of the advance directive has almost automatically followed the larger thinking process. Australia, interestingly, continues to debate the question. What is intriguing is that here in India, where we do not yet have advance directives for the relatively simpler end-of-life situations, rushing in with PADs is, at best, questionable.
In a critique of the MHCB 2013, commenting on the process, Kala  has this to say: “One is then entitled to wonder why the government wants to push a change that nobody has asked for, has not worked elsewhere, has the potential to upset certain long-standing societal balances, and is not going to make any of the stakeholders happy.”
In conclusion, while the concept of advance treatment planning is certainly a valuable concept that needs to be inculcated in all the discourses of medical and mental health care, the use of the legal tool of the advance directive in psychiatry remains a complicated and difficult concept that has not necessarily had its intended consequence in the West, where it has been in place for the last few decades now. At present, in this author's opinion, the fact remains that PADs remain complicated tools of communication that are driven by larger discourses on personal autonomy. There is a complex space that is influenced by the interaction between the individual, the family, and other care givers and society. Here, privileging the rights of the one group of stakeholders over that of others remains a difficult part of an on going societal dialog. By rushing in to hastily implement it, we are risking perhaps falling into a trap of pushing societal change in unintended direction, and this, should be a topic for further discussion.
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Conflicts of interest
There are no conflicts of interest.
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