A majority (81%) of the eligible patients who consented to participate in baclofen and dantrolene withdrawal were able to stop or minimize the dose ofthe medication; some patients experienced improvement in associated side effects. These results are similar to those seen in the earlier cisapride withdrawal project and confirm that periodic attempts to stop medications in patients receiving long-term institutional care are reasonable.

The earlier study used a 2-week follow-up period after medication withdrawal, but it was felt that this period was too short to judge the full effect of stopping a medication. A 4-month follow-up period seemed more reasonable to accurately judge the effect, but health care staff found that documentation during this time was tedious. This concern was addressed by reducing the frequency of monitoring during the latter part of the follow-up period. For instance, the team initially monitored parameters once or twice weekly, but once the last dose of baclofen or dantrolene had been given, the frequency of monitoring was halved (e.g., to once every 2 weeks). Six weeks after the last dose, the frequency was halved again (e.g., to once every 4 weeks). Ten weeks after the last dose, the frequency was halved for the remainder of the 4- month period (e.g., to once every 8 weeks). If there were changes in the patient’s condition at any time during the withdrawal or follow-up period, the monitoring plans were discussed. These discussions occurred in person (during regular and impromptu meetings), by telephone, or by e-mail.
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The reasons for participating in the medication withdrawal study seemed to relate to a few distinct themes. Physicians generally did not recommend patients for whom they felt the medication was clearly working. We did not ask them to describe how they felt the medication was benefiting the patient. They also excluded patients whose families typically did not like changes in medications. Interestingly, the main reason for including patients was that the patient was stable and it was unclear if the medication was needed. This reason contrasts with anecdotal reports of reluctance to change medications when the patient seems stable. Perhaps the development of a standard tapering protocol and an individualized monitoring plan involving the whole team were factors that allowed physicians to feel more comfortable in making a change for an otherwise stable patient. This argues for continuation of the Targeted Medication Withdrawal Program. Patients and their substitute decision makers were hopeful that the medication tapering might somehow offer benefits to the patient. Surprisingly, many patients and substitute decision makers identified the need to participate in research for the benefit of future patients as a key reason for their own participation. For these patients to be so concerned about the lives of others was humbling. A few patients thought that they might be experiencing adverse effects, and a few doubted the effectiveness of the therapy. These results are descriptive at best but warrant further investigation. Much research has been performed and published about the decision- making process when a patient starts therapy, but very little has been done to describe how physicians, patients, and families make decisions about reassessing and stopping therapy. In an age when medications are being used more and more often and when inappropriate use is common, more information is needed about how to identify when therapy is no longer effective and how to influence physicians’ and patients’ decision making about stopping therapy.

Pharmacists, working with the other health care professionals, determined that 4 patients had adverse effects that improved with tapering or withdrawal of the antispasticity agent, including improvements in alertness and communication and, notably, an improvement in muscle strength that resulted in a patient being able to lift his hand to push a wheelchair door button. While this may seem a small accomplishment to some, it created a significant change in quality of life for the patient, as it allowed him to move around the hospital more easily. Increased alertness and communication were viewed positively by some and negatively by others, who felt that the patients would benefit from more sedation.
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