Can occupational therapy be discontinued during the course of the illness?

Every treatment, including occupational therapy, requires the establishment of goals that are determined jointly by the patient and the physician. Establishing treatment goals and obtaining the patient’s consent to therapy is a fundamental principle of medicine.

In ALS, occupational therapy is an important treatment option throughout the course of the disease. However, the goals and content of occupational therapy change as motor deficits increase.

Physical “training,” including passive movement of the body, is the primary focus of physical therapy. Therefore, in cases of severe motor deficits, the focus typically shifts from occupational therapy to physical therapy. However, there are significant individual differences even within this general approach.

Consequently, significant occupational therapy needs may arise when adapting and adjusting complex assistive devices, which can be particularly challenging and time-consuming—especially in cases of severe motor deficits (including locked-in syndrome)—and require intensive occupational therapy care.

From the patient’s perspective, “effectiveness” is not always immediately apparent. Developing daily living skills is a lengthy process, and its “training effect” is not as obvious as it is with physical therapy. As a result, some patients are skeptical of or reluctant to undergo occupational therapy.

In this situation, patients should be informed once again about the long-term goal of maintaining their ability to perform daily activities. Nevertheless, a refusal to participate in occupational therapy—in the spirit of therapeutic self-determination—should be accepted and is perfectly acceptable.

A reduction in occupational therapy is particularly evident in the advanced stages of the disease, especially during the palliative care phase. Occupational therapy can involve time commitments (treatment time) and social burdens (scheduling appointments; transportation logistics), which—when weighed against the benefits—may lead the patient and their social circle to discontinue occupational therapy.

Open communication between the patient, physician, and therapists regarding the individual goals and treatment plan for occupational therapy helps to tailor the intensity and duration of occupational therapy—as well as the potential conclusion of this treatment—to the patient’s specific needs.