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values regarding quality of life, the fear of being a burden, and the associated costs of long-term care, which are typically not covered by third party payers, represent the most likely causes of why patients decline this option58 Most patients choose to receive their terminal care at home Hospice services provide an invaluable resource that allows most patients to die comfortably within the con nes of their own home There are many counseling issues that occur in the course of illness of a patient with ALS One significant issue concerns the timing and extent of discussion regarding emotionally charged subject matter relating to interventions, particularly at the end of life Ideally, information should be delivered at a rate of the patient s choosing The ideal and often elusive goal is to achieve a balance between honest disclosures of the realities of the disease, while maintaining a positive attitude that a reasonable quality of life still exists At some point, the patients should be allowed to voice their opinion about what they do and do not want as their disease progresses and interventions are potentially required Many, if not all, patients fear that their death will involve physical suffering Some may be intrepid enough to broach the subject, some may not Providing patients with the reassurance that their death will not involve physical suffering is a dif cult but important task for the ALS clinician to assume A frank discussion about the logistics and limits of how this will be insured may be valued by the patient and the family as well Typically, neurologists, through hospice nurses, provide analgesia and sedation, with the goal of relieving pain and dyspnea without signi cantly suppressing ventilation As a result, most patients with ALS die peacefully and comfortably The last 12 years have seen an expansion in the number of clinical trials in ALS Patients should be encouraged but not coerced to participate in these Not all patients will be eligible Patients with exclusively bulbar disease or vital capacities less than 60% of predicted are typically excluded from enrollment Many patients are concerned that their disease is contagious or hereditary Fortunately, they can be assured that the former is not the case, and the latter is highly unlikely if there is no family history of the disorder, assuming that they are knowledgeable about their parents identities, and that their parents lived to a reasonable age In part due to the paucity of effective treatments, many patients with ALS seek advice from their physicians regarding alternative, natural treatments for their disorder There is no clear correct response A dogmatic response on the part of a physician in opposition to this approach runs the risk of losing the patient Conversely, the physician has a responsibility to dispel what seems to be a generally held perception that natural is syn-.

FIGURE 8-1

onymous with safe Any substance that is biologically active enough to be bene cial is also biologically active enough to be harmful Natural substances do not bene t from the same scrutiny and quality control as do pharmaceuticals and pose additional risk for that reason alone

if ( myInt >= 0 ) { if ( myInt <= 10 ) printf( "myInt is between 0 and 10.\n" ); } else printf( "myInt is negative.\n" );

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