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24. Psychiatric Rehabilitation and Recovery
Keywords
RehabilitationSupported employmentAssertive community treatmentEntitlement programsRecoveryPeer supportTeam-based careEssential Concepts
Psychiatric rehabilitation and psychiatric treatment are separate, yet equally important, complementary components of schizophrenia care.
Psychiatric rehabilitation focuses on function and role outcomes, not on symptoms. Good programs build new skills that can be used toward achieving rehabilitation goals.
A rehabilitation assessment clarifies the patient’s goals and then assesses skills and supports needed to attain these goals, taking into account strengths and weaknesses. Rehabilitation goals are personal goals that can only be developed in collaboration with a patient, not for him or her.
Work adds so much to ourselves that vocational rehabilitation (particularly supported employment) should be given utmost attention, even though the odds for competitive employment for patients with schizophrenia are less than 1 in 5.
Assertive community treatment (ACT) is a service delivery model that brings care that previously required institutionalization to seriously ill patient in the community, increasing their freedom.
A functioning welfare state providing sufficient support for its citizens is a necessary basis for rehabilitation and reintegration in society.
Peer support can play a large role in fostering a hopeful attitude toward recovery as a mindset in patients and their families, regardless of clinical status.
Recovery means different things to different people. Recovery can be viewed as a mindset and psychological process that allows people to recover a sense of personhood that is not merely defined by having schizophrenia. It does not mean that no help is needed, including medications.
“There can be no transforming of darkness into light and of apathy into movement without emotion.” (cited in [1])
– C.G. Jung 1875–1961, Swiss psychiatrist
It requires more than medicines to treat most illnesses. Rehabilitation medicine is an unquestioned and obligatory part of care for many medical conditions: for optimal functional results, orthopedic surgery is followed by rehabilitation in the form of physical therapy (PT). Similarly, psychiatric care (i.e., pharmacological and psychological treatments) for schizophrenia needs to be accompanied by psychiatric or psychosocial rehabilitation in order to achieve the best possible functional outcomes. Unfortunately, all too often only medications are provided, with expectable poor result. Clinical training needs to occur in the real world of community settings in order for young psychiatrists to appreciate the limitations of a “meds only” symptom-based focus and instead make them champions for rehabilitation and its focus on function and societal reintegration. Psychiatric rehabilitation is complicated by a sociocultural context of stigma, exclusion, and discrimination. Changing societal attitudes and discriminatory laws are part of rehabilitation in the larger sense of societal reintegration.
Terminology
I will follow the tradition in the mental health field and juxtapose psychiatric treatment with psychiatric rehabilitation even though you could consider rehabilitation to be one of the tools of treatment at your disposal. Psychiatric treatment and psychiatric rehabilitation are not mutually exclusive but rather complement each other. Consistent with my professional role and medical training, I will refer to patients rather than clients or consumers. The very nature of rehabilitation is person-centered as the patient is critical in defining rehabilitation goals.
To avoid the inflation of the term rehabilitation to include any program that the patient attends, a pioneer of rehabilitation in the United States, William Anthony, has suggested considering skill building to be the critical element of narrowly defined rehabilitation. If an activity does not involve skill building, it is better called enrichment. Going bowling with peers is enrichment, not rehabilitation in the narrow sense (unless the goal is to build the skill of becoming a proficient bowler). In a broader sense, however, even bowling can be rehabilitation if a stated goal is teaching social skills and not merely killing time. Good programs focus on acquiring one specific skill at a time and provide ongoing support down the road, as needed. Successful rehabilitation decreases social isolation, improves skills and confidence, enlarges social networks, and increases the chances of returning to work or school. Successful rehabilitation should allow the patient to be a member of society and contribute to the greatest extent possible.
Key Point
One useful definition of “psychosocial rehabilitation” is the following by Bachrach: “A therapeutic approach that encourages a mentally ill person to develop his or her fullest capacity through learning and environmental supports” [2]. This patient-centered definition acknowledges the need for patient participation as well as the need for adjustments by family and community. It also puts the patient in the middle of the rehabilitation effort.
Rehabilitation starts as early as possible and is not contingent on symptom resolution, which can be elusive. First-episode programs therefore need to have a strong rehabilitation component (e.g., modeled after the RAISE initiative, see in the first-episode Chap. 11). However, it is difficult to fully participate in rehabilitation programs if you are too ill. This is similar to pain and PT: your ability to participate in PT is limited if you are in too much pain but very possible with some modicum of pain control.
Rehabilitation Goals and Assessment
Psychiatric rehabilitation does not focus on symptoms but on function and role outcomes [3]. It will come as no surprise that most patients have dreams and aspirations similar to the rest of us: to live a life with security, friends, and a sense of belonging; with a few things they can call their own; and with something meaningful to do. The World Health Organization recommends assessing health and disability in six domains: cognition, mobility, self-care, getting along, life activities, and community participation (see Chap. 8 for a longer discussion about how to measure function) [4]. These six generic domains need to be made concrete in dialogue with a patient whose specific goals will vary based on illness stage and interests. A rehabilitation assessment clarifies the patient’s goals and then assesses internal and external resources available and skills and supports needed to attain these goals. (Almost) all patients bring some internal strengths to the table (e.g., humor), and most also have weaknesses that need to be addressed (e.g., negative symptoms), either by building skills or by directly compensating for them. Some patients can rely on family support or entitlements due to previous work. Difficult cases for rehabilitation have serious interpersonal deficits and seemingly endless social needs, with few internal or external resources to draw from.
Tip
A good rehabilitation question to ask: “Where would you like to be one year from now?” Based on the answer (e.g., get my GED), you need to figure out which new skills are needed to get there (e.g., take GED classes) and the supports needed (e.g., where to enroll the patient, financial supports, individual tutors).
For adult patients, competitive employment in some capacity would be a crucial rehabilitation achievement that unfortunately is rarely achieved in our society if you have schizophrenia. Work defines our role in society and can give us meaning, beyond the mundane consideration of allowing us to buy things. In the United States, less than 15% of patients with schizophrenia in the representative Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) cohort worked competitively [5]. True, not everybody wants to work, not everybody can work, and working does not make sense for everybody economically. However, the reasons for this poor functional outcome might go deeper and can leave us with some pessimism. The sociologist Sennet has used the term “specter of uselessness” to indicate a dilemma in a society built on modern meritocracy in which new values are no longer skills but adaptability and employees are judged by potential and not by actual skills and achievements [6]. These larger, socioeconomic factors that lead to lack of opportunity are huge impediments to successfully finding work for persons with disabilities like schizophrenia. All societies to some extent or another are confronting this specter of uselessness in postcapitalist societies, with highly specialized service industries and their need for knowledge workers instead of unskilled laborers [7].
While it ultimately is the patient who needs to decide about his or her rehabilitation goals [8], it would be foolish to focus merely on strengths and desires and lose sight of real-world impairment and deficits (for the assessment of negative symptoms and cognition, see Chaps. 28 and 29, respectively). Psychiatrists can be very useful in delineating cognitive impairment (e.g., by ordering neuropsychological testing) and help pace and prioritize rehabilitation efforts. While I am not opposed to adopting the more positive language of rehabilitation and the recovery movement when appropriate (see last section of this chapter), I suggest a healthy sense of realism and frank discussion of impairments and impediments to rehabilitation as well. Motivational impairment is one of the biggest obstacles to successful psychiatric rehabilitation that is often not acknowledged honestly enough.
Clinical Vignette
Andreas is a 45-year-old man with deficit schizophrenia. He lives in a group home with other patients who also have schizophrenia. Every morning the “program van” comes and picks up the patient and the other group home members to go to the “recovery-oriented” (from the program brochure) psychosocial day program where he spends 5 hours every workday either in groups or in a common area. Staff members have signed him up for the groups that he must sit through. In the offered groups, he sits and waits until time is up. Sometimes he protests that he would rather stay in the group home; this is usually ignored.
This patient represents a not so rare but rarely talked about problem: you cannot rehabilitate to people, only with them. While rehabilitation goals will be determined by motivated persons, what about those who are content sitting at home doing nothing? After all, we allow citizens to make this decision, unless you have a mental illness. Does family opinion or staff opinion matter, or are rehabilitation goals solely determined by patients? I am not proposing that there is an easy answer, but simply pointing out that forcing program participation is closer to social control than rehabilitation engaged in freely. At a minimum, for any program that you send your patient to, ask yourself what the goals of the programs are and if you would send a family member to the program.
“Wellness” is a fairly recent focus of rehabilitation, as the “wellness” movement has swept the country. While the goal staying well is a difficult one to be against, I will caution against overlooking the need for taking care of real patients clinically: patients who have symptoms and difficulties functioning. They may not be able to jump on the wellness bandwagon easily. Not everybody can pick himself up by his or her bootstraps. Good rehabilitation specialists work with patients while acknowledging the real world (e.g., cognitive deficits, lack of interpersonal skills, limited education, poverty), providing adequate support and fostering a hopeful attitude that change for the better is possible, despite everything and in the long run.
Providing false hope by setting unrealistic and unattainable goals with resulting failure is a poor prescription. High expectations can be too much, and some patients crumble under the stress of a new goal. However, low expectations can become self-fulfilling prophecies, and some need to be challenged in order to move. Show flexibility in setting goals and humility about your ability to predict the future; I have been proved wrong both ways. Some patients will surprise you with talents and accomplishments that seemed impossible; others where you had no concerns proved less resilient. In all cases, I remain hopeful for small improvements with time.
Tip
Moving toward more “independence” comes up regularly in discussions about rehabilitation goals. The Peter Principle applies to rehabilitation: patients are “promoted” toward more and more independence until they reach their own level of “incompetence” with regard to independent living; the group home was too restrictive, the own apartment with daily visiting nursing visits worked well, and the own apartment without support proved insufficient.
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