This article appeared in "Psychiatric Annals", the Journal of Continuing Psychiatric Education, March 1997, Volume 27, #3
Dr. Hauser is Clinical Instructor in Psychiatry, Harvard Medical School; Assistant Clinical Professor, Department of Psychiatry, University of Connecticut School of Medicine; and Forensic Psychiatrist, Program in Psychiatry and the Law, Massachusetts Mental Health Center.
Address reprint requests to Mark J. Hauser, MD, PO Box 222 Newtonville, MA 02160.
People with mental retardation are susceptible to the full range of psychiatric disorders; indeed, their vulnerability to some disorders (e.g. adjustment, anxiety, and impulse-control disorders) is somewhat higher than for the general population.1,2 Although only a minority of people with developmental disabilities have major mental illnesses, the involvement of psychiatrists need not be limited to that minority.
A range of emotional and behavioral problems and problems in adjusting to the retardation or to various life situations may be amenable to psychiatric consultation. In this context, therefore, it seems useful to define "dual diagnosis" broadly as the intersection of mental retardation with psychiatric problems at any level of severity, thus setting a low threshold for psychiatric involvement. Even more broadly, psychiatrists can and should be a resource not only for individuals and their treating clinicians but also for treatment systems, lending a psychiatrically informed perspective to program design, development, and implementation.
This expansion of the psychiatrist's contribution is impeded by the fact that residency programs in adult psychiatry typically include little or no training in mental retardation.3 Highly relevant background knowledge can be obtained from fellowship training programs in child and adolescent psychiatry, genetic counseling, and pediatrics, but these programs offer little guidance for treating adults with mental retardation. This gap in training is unfortunate because mental retardation offers psychiatrists today an exciting opportunity to participate in an expanding and rewarding subspecialty. At the same time, it brings psychiatrists into an arena of professional interactions involving competing interests and conflicting values (e.g. respecting autonomy versus ensuring safety). To inform and inspire the practitioner and to stimulate curriculum development, this article briefly covers both the rewards and pitfalls of working with the developmentally disabled.
The involvement of psychiatrists with mental retardation has waxed and waned.4 Past decades have witnessed a transition from unquestioned psychiatric authority, often narrowly directed toward warehousing and sedation, to the ascendancy of behavioral modification techniques. In some settings, psychiatry became associated with the overuse and misuse of medication. Understandably, this association led to a reluctance to involve psychiatrists in the care of people with mental retardation. More recently, an integration of various modalities, including psychodynamic, psychopharmacologic, and behavioral, has occurred. In the current "decade of the brain," recognition of the value of psychiatric medications, used in the context of a comprehensive, interdisciplinary treatment approach, is growing.
Those who provide psychiatric care for people with mental retardation must understand the environment in which they work. That environment has been shaped by three recent trends: interdisciplinary treatment, deinstitutionalization, and procedural safeguards. Together, these trends have produced improved systems for delivering care, which, when added to advances in medication, have made possible a higher quality of care.
As mental retardation has come to be better understood, an array of service providers has arisen to provide a spectrum of services tailored to a range of clinical and practical needs. These providers include the psychologist, behavioral specialist, social worker; nurse, physical therapist, occupational therapist, speech therapist, day program staff, case manager, service coordinator, qualified mental retardation professional, group home manager, and direct care staff. At its broadest extension, the interdisciplinary team encompasses not only the various health professionals employed by an agency but also all the interested parties, or "stakeholders," involved with the client, including family members, guardians, and legal advocates. All of these individuals care about the developmentally disabled person and contribute to his or her life, and they ought to be included in decision making. The challenge for psychiatrists is to discover their most useful roles and most effective contributions within this complex service-delivery system. They can do this best not by simply fitting into roles laid out for them by others but by creating their own roles in settings receptive to such initiative.
People with mental retardation live in a range of settings: residential facilities (including state schools), group homes, supported living programs, with families or friends, and even in their own homes. As a result of a national trend to reduce the census of state schools and then to close these and other residential facilities altogether, the majority of people with mental retardation are now cared for in community-based systems that vary in organization and quality. Deinstitutionalization presents the psychiatrist with a logistic challenge. Whereas it can be convenient to work with clients and their caregivers in a residential facility, it requires greater effort and coordination to maintain contact efficiently with clients and caregivers scattered throughout the community.
Since the 1970s, various structures have been created to safeguard client rights and promote quality care. As expressed in administrative policy, departmental regulation, case law,4 and consent decrees resulting from litigation, these structures articulate standards of care and strategies for monitoring their implementation. Specifically, requirements have been developed for the least restrictive setting; appropriate medical and psychological evaluations; the provision of' basic necessities; safety, training, habilitation, and freedom from unnecessary restraints; and appropriate care in the community, including psychiatric care. The unnecessary or indiscriminate use of psychotropic agents is prohibited. Treatment using medications must be based on a comprehensive diagnostic assessment, including a functional analysis of behavioral problems and a process of informed consent.
Such safeguards can improve quality of care by compelling clinicians to articulate the rationale for each of their decisions and to achieve consensus and gain informed consent. Along with this predominantly beneficial impact, scrutiny may have side effects in the form of tensions and irritations that can affect psychiatrists' job satisfaction. Psychiatrists may feel that someone is looking over their shoulders, constraining their autonomy, and questioning their clinical judgment. They may react to these feelings in less than productive ways. These reactions can be turned around when psychiatrists embrace the underlying purpose of the scrutiny rather than chafe at its sometimes intrusive manifestations.
Ironically, working with a thorough-going form of scrutiny can be more satisfying than a superficial one. In jurisdictions where the applicable case law is narrowly focused on justifying the use of antipsychotic medication, judges may readily approve such medication while declining to consider the feasibility of alternative approaches. In jurisdictions where a broader review of clinical decisions is mandated, the arduousness of such a review may be off set by the willingness of an interdisciplinary review committee to assess all facets of a comprehensive, flexible treatment strategy and the willingness of funding agencies to empower the implementation of a comprehensive plan.
SERVICE DELIVERY MODELS
Among the numerous arrangements by which a psychiatrist may work within a service-delivery system, two main variations are high-lighted here. They are analogous to a physician receiving patients in the office versus a physician making "house calls."
The One-on-One (Clinic-Based) Model
In this conventional model, the client is brought to the psychiatrist (whether at a private office or community mental health center) for evaluation. In such a setting, the psychiatrist sees the client in isolation from the client's living conditions and regular caregivers. Lacking the opportunity to observe either the circumstances (such as interactions with fellow residents) that may have precipitated a behavioral problem or any potentially supportive peer or staff relationships that might be mobilized therapeutically, the psychiatrist is likely to fall back on the routine "Rx reflex" rather than develop a multifaceted treatment strategy.
Moreover, in a striking illustration of the maxim that clinical presentations are invariably affected by the manner of diagnostic observation,5 a developmentally disabled person is likely to present quite differently when taken out of his or her usual milieu. The client may become more anxious merely by being removed from his or her normal surroundings and activities. Memories of past visits to physicians for physically uncomfortable procedures (e.g. to have blood drawn) may exacerbate this anxiety. Even more common, perhaps, is the opposite reaction, the "vanishing problem" whereby agitated behavior and even psychiatric symptoms disappear when the person is removed from the conditions that provoked them.
Finally, in the one-to-one model, the psychiatrist loses the benefits to be derived from hearing the opinions of various caretakers and working with them to plan the treatment. To minimize this disadvantage, the staff member who is to transport the client should be asked to meet first with other staff members so as to gather their observations and opinions and report them to the psychiatrist. After the consultation, the staff member ought to relay information from the psychiatrist to the rest of the staff (Relaying this information requires objectivity and good faith on the part of the staff member.)
The Consulting (On-Site) Model
A more sophisticated model that (when feasible) promises greater effectiveness is one in which the psychiatrist visits the agency where the client is regularly cared for. In this way, the psychiatrist can observe the client's day-to-day interactions with staff and peers in a residential, vocational, or other community setting. Such unobtrusive observation can partially compensate for the deficiency in expressive language skills that may make the client difficult or impossible to interview. All the while, the psychiatrist also quietly observes the dynamics of the agency as they impact on the client and relevant physical environmental variables, such as noise, activity levels, and crowding. By being on-site, the psychiatrist can develop relationships with staff members he or she might otherwise never meet or communicate with, turn them into allies on behalf of the client, and thereby organize or become part of a treatment team. Finally, leaving one's controlled office environment makes one vulnerable in a way that fosters empathy; getting lost and having to phone in for directions helps one identify with the developmentally disabled person attempting to navigate a difficult, sometimes threatening world like nothing else.
The psychiatrist's presence on site does not, however, obviate the need for staff preparation. The psychiatrist who must gather information under time pressure will not be as effective as the one who can draw on information already collected by the staff.
ROLES OF THE PSYCHATRIST
Corresponding to the one-to-one and consultation models, respectively, are two conceptions of the psychiatrist's role-the one narrowly defined and routinized; the other multidimensional and creative.
The Narrow Aperture
The psychiatrist's role, perceived through a narrow aperture of expectation, is stereotyped and conventional. It calls to mind the worst caricature of the psychiatrist of decades ago, presiding over a warehouse full of drugged patients. In today's version, the psychiatrist is viewed in one-dimensional terms as a psychopharmacologist dispensing prescriptions, which is a minimalist, "black box" model of psychiatric input: the patient is brought to the doctor's office and comes out with medications. Little or no sharing of information occurs between the staff and the psychiatrist, and the doctor's reasoning is not articulated.6
This role can be found when an inexperienced psychiatrist fails to appreciate the contribution of interdisciplinary team members or when the agency staff lack exposure to a more collaborative approach or distrust psychiatrists and want to limit their participation. Indeed, the staff may simultaneously (or alternately) demand and disparage the psychiatrist's acting in this role of "med-picker." Recently, some reversion to this model has occurred under the pressure of managed-care reimbursement mechanisms that reward billable units of service rather than broad involvement and deep understanding. This example is just one manifestation of today's "psycho-pharmacoeconomics."
The Wide Aperture
When the aperture of expectation is widened, the psychiatrist's role becomes multi-disciplinary and flexible, drawing on many areas of expertise (e.g., developmental, psychodynamic, and pharmacologic). Other dimensions of expertise are contributed by different members of the interdisciplinary team. In this collaborative arrangement, the person being cared for is seen as the "client" of the whole team and agency, not just the psychiatrist's "patient." The psychiatrist spends time not only with the client but also with the agency staff, advocates, and family members. The psychiatrist relies on, benefits from, supports, and educates these other team members.
Often, the psychiatrist is in the best position to synthesize and coordinate the many perspectives that contribute to the client's care. This coordination is done, however, with respect for the knowledge and experience of staff from other disciplines. Decision making proceeds by consensus, not by command. The psychiatrist's role is that of a navigator, guiding a fluid, empirical process with an intuitive feel for what might work and an ability to communicate it to others.
Psychiatrists entering this field will find that, the more they learn from mental-retardation specialists in other disciplines, the more relevantly they can introduce psychiatric expertise. By listening and admitting what you do not know, you gain the respect of others for what you do know.
Practicing in the wide-aperture role typically involves longer consultations, to allow for more teaching and exchange of information. Logistic and reimbursement issues may arise; however, this way of interacting can be intensely rewarding for all concerned, not least for the client. This expanded psychiatric role is by no means standard, and it is a privilege, not an entitlement, to be able to fulfill it. With effort, it is possible for a resourceful consultant to nurture this kind of relationship with client agencies.
Variety of Roles
The psychiatrist who does not let artificial boundaries constrain his or her participation may assume a range of consulting roles in different settings and situations. Among these roles are the following:
To work effectively in the multiple roles of a consultant in the field of mental retardation, the psychiatrist should have (or have the capacity and willingness to develop) the following skills and competencies:
Much is expected of the psychiatrist who consults in the expanded role described here. In return, the psychiatrist expects the following from other members of the interdisciplinary team:
PITFALLS AND CHALLENGES
Psychiatrists working in the field of mental retardation are likely to encounter certain recurrent pitfalls in their attempts to work collaboratively with other caretakers. These pitfalls can often be overcome if they are anticipated and properly managed. A few of the major areas of conflict and tension, and their possible impact on the well-being of clients, are outlined here.
Clinical uncertainty is ever-present and so is the urge to deny it.5 It is only human to crave certainty, especially in the midst of the pain and fear associated with illness and the frustrations brought on by developmental disabilities. This pressure to shut down a complex decision-making process by asserting a spurious certainty comes not only from clients and their families, but also from clinicians, including psychiatrists who have an overly quick prescription-pad reflex.
In the face of uncertainty, people become anxious, team functioning deteriorates, the resort to bureaucracy increases, and frustration rises. Adversarial postures emerge, polarization intensifies, and the ability of the team to rally together on the client's behalf is compromised. In the immediate clinical situation, these pressures are felt as a collective urge to do something, anything, even if it is the wrong thing-and, surely, to avoid doing what feels like "nothing at all," even if it is really a sensitive "watchful waiting" strategy.
One should resist the pressure to allay staff members' anxieties (or one's own) with premature drug prescription. Instead, one may need to manage this tension by bringing it to the surface, acknowledging both the uncertainty and its denial. As in other situations of conflict, making the covert overt can go a long way toward dispelling tension and breaking a stalemate. When uncertainty is shared, both its cognitive and affective burdens become easier for all concerned to bear, and a great potential threat to the therapeutic alliance becomes instead part of the foundation of the alliance. By explicitly identifying with the wish for certainty felt by clients, relatives, and clinicians, the psychiatrist can help them let go of that wish, contemplate realistic actions, and make difficult but wise decisions.
Impediments to Consensus
On any clinical team, someone may unconsciously impede effective planning out of a fear of taking chances, of precipitating change, or even of seeing a person improve and make progress, or else a staff member may play devil's advocate, assuming an adversarial role to ensure that whatever course is chosen will have been thoroughly considered. In the field of mental retardation, such conflicts regularly are raised to an ideologic level in the form of a bias against medications and an inflated estimate of the efficacy of behavioral management.
To achieve consensus in this atmosphere, it helps to have both psychodynamic understanding and conflict-resolution skills. The psychiatrist may need to involve staff members in the equivalent of an informed-consent process, reconciling differences by encompassing multiple viewpoints in a contingency-planning structure. One should emphasize the provisional, empirical nature of any decisions made and, as needed, the availability of a subsequent process of consultation and consensus for mid-course corrections or changes in direction.
Procedural and Legal Obstacles
Conflicting values and biases, when not resolved internally in the collective decision-making process, may escalate into an application of external constraints. The procedural safeguards intended to benefit the client can impede access to care by setting unduly high thresholds for action, thereby causing harmful delays. Such intrusion of the legal process into clinical decision making has been called (by analogy with "iatrogenesis") critogenesis ("judge-caused harm").8 This term refers not only to actual judicial interference with clinical decisions but also to distortions in decision making caused by the anticipation of such interference-for example, the fear of malpractice liability.9
Critogenesis is best managed preventively by maintaining an atmosphere of collaboration and consensus among the interdisciplinary team. Frank discussion of the possible side effects of procedural safeguards, including effects on the therapeutic alliance, should be encouraged. The psychiatrist who can successfully navigate such dilemmas and help others navigate them is a major asset to the clinical team and, most important, to the person with mental retardation.
The author is indebted to Archie Brodsky for his help with the manuscript.
1. Parsons JA, May JG Jr., Menolascino FJ. The nature and incidence of mental illness in mentally retarded individuals. In: Menolascino FJ, Stark JA, eds. Handbook of Menial illness in the Mentally Retarded. New York, NY: Plenum; 1984:3-43.
2. Szymanski L, Madow L, Mallory G, et al. Psychiatric services to adult mentally retarded and developmentally disabled persons (Report of APA Task Force #30,. Washington, DC American Psychiatric Association. 1990.
3. American Psychiatric Association Committee on Psychiatric Services for Persons with Mental Retardation and Developmental Disabilities. Psychiatry and Mental Retardation. A Curriculum Guide. Washington, DC: American Psychiatric Association; 1995.
4. Szymanski LS, Stark J. Mental retardation: past, present, and future. Psychiatry Clin North Am. 1996; 5:769-780.
5. Bursztajn HJ, Feinbloom RI, Hamm RM, Brodsky A. Medical Choices, Medical Chances: How Patients, Families, and Physicians Can Cope With Uncertainty New York, NY Routledge, Chapman & Hall; 1990
6. Szymanski LS, Wilska M. Mental retardation. In Tasman A, Kay J, Lieberman JA, eds. Psychiatry Philadelphia, Pa: WB Saunders; 1997:605-635
7. Gutheil TG, Bursztajn HJ, Brodsky A. Malpractice prevention through the sharing of uncertainty: informed consent and the therapeutic alliance. N Engl J Med.1984; 311:49-51.
8. Bursztajn HJ. More law and less protection: 'critogenesis,' 'legal iatrogenesis,' and medical decision making. J Geriatric Psychiatry Neural. 1985; 18:143-153
9. Hauser MJ, Commons ML, Bursztajn HJ, Gutheil TG Fear of malpractice liability and its role in clinical decision making. In: Gutheil TG, Bursztajn HJ Brodsky A. Alexander Y, eds. Decision Making in Psychiatry and the Law. Baltimore, Md: Williams & Wilkins; 1991:209-226