One of the most critical aspects of end-stage brain tumor care is the management of steroid dosing. The steroid itself is perhaps the single most important medication taken during this period of care. Not only may the drug have an impact on the length of survival, but it can also accomplish the goal of palliative (comfort) care.

As any primary caregiver knows by this point, Decadron (or its generic, dexamethasone) is a steroid that works well to prevent or control brain edema (swelling). When the dosage is sufficiently high, Decadron has the ability to mask symptoms, "sharpen the edges" of a patient, alleviate headaches, and possibly raise quality of life or function. Through their experience along the disease course, caregivers may have seen Decadron "rescue" a loved one from severe headaches or a new onslaught of tumor symptoms. But they have also learned that Decadron's benefits sometimes carry a price, including, among other things:

• Insomnia

• Increased appetite and the potential for weight gain

• Personality changes (ranging from moodiness to psychosis)

• Muscle loss (particularly in the thighs, which bear the patient's weight when rising, sitting, and walking)

• Bloated appearance (distended abdomen, cushingoid swelling of the face, and sometimes a hump in the neck)

• Pooling of fluid in the extremities

• Potential for steroid-induced diabetes

The steroid motto all the way along, then, has tended to be "The least we can get by with, the better." This is because higher doses and long-term use multiply the effects the patient and caregiver must address. There has always been a tradeoff, or a delicate balancing act. By the time the patient enters hospice care, he or she has typically been on a number of steroid doses...up...down...all over the map, as needed. The medicine cabinet of a brain tumor patient is likely to contain vials of unused Decadron tablets of several different strengths, thanks to increases, weans, and adjustments that may have occurred over time. Up until this point, the fear of long-term effects has probably driven the goal of taking as little steroid as possible while still maintaining the status quo.

During the hospice period, however, the caregiver must learn to think of Decadron from new angles. Importantly, long-term effects are not of concern now, so this alone shifts the way of thinking about this drug that "we love to hate," allowing for more freedom and flexibility. Previously, the patient and caregiver may have felt that raising the dose now may mean paying for it later...in terms of having to deal with weaning, worrying about muscle wasting and loss of mobility, etc. Now, though, the lifting of those long-term concerns means that a caregiving team can concentrate on short-term goals...and use dosing to the best advantage of the patient.