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Ask the Doc: Q & A with Edward Kasarskis, MD, PhD Edward Kasarskis, M.D., Ph.D. is Director of the multidisciplinary ALS Center at the University of Kentucky Neuroscience Center in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY.
Q: I was recently told that I should have a surgical procedure at my local hospital, and I would most likely stay overnight for a day or so. What should I do to prepare for the hospitalization? A: That’s a good question. By and large, people with ALS are not often hospitalized, due to good outpatient care for their ALS. But occasionally things come up - many of them unrelated to ALS - and a hospitalization is required. Since you and your family deal with ALS every day, it is easy to lose sight of the fact that ALS is a fairly rare condition. The implications of these realities are clear: the hospital, the nurses, and your doctor are not likely to be familiar with the special needs of an ALS patient. What to do? You are about to experience a clash of two cultures--yours (amazing outpatient, in-home care provided by the family) and theirs (a complex, rigid, inpatient system). What to do? The answer: Be organized and communicate. It’s important to have a plan. Identify a specific family member to communicate with the medical, nursing, and ancillary staff about your home routines throughout the hospitalization. Most of the staff will never have cared for a patient with ALS and they will most likely not be completely familiar with the disease. As a result, you cannot simply assume that they will automatically anticipate your needs. In fact, the nursing staff and physicians will probably be taken aback by all that you and your family do in the home setting on a daily basis. They won't appreciate beforehand that you may run a mini-ICU out of your bedroom! Be sure to let the staff know that you have ALS and detail for them how it affects you, paying particular attention to challenges related to ventilation, nutrition, mobility, and communication. Be sure they know that your caregiver plays a significant role in your daily life and see what accommodations can be made to facilitate your caregiver’s ability to be at the bedside as necessary to help carry out regular routines for you. Ask the admitting staff what equipment you can bring from home and what the hospital will provide. Be sure to label any equipment you bring clearly with your name and phone number. Hospital policies vary on this point and can be very rigid and arbitrary, especially in the case of bringing in your BiPAP and using it on the ward. Many hospitals now have 24/7 hospitalists. These physicians are employed by the hospital to assess and manage daily care for those who are hospitalized. They are very skilled at treating frequent, high volume medical problems such as diabetes, congestive heart failure, infections, and cancer. Typically, such physicians aren’t experts in ALS. They may be very challenged by your illness and will likely consult with a neurologist during your stay. However, you still need a proactive approach to communicating your exact status. Know your medications and exact doses. Type a summary sheet and make copies to hand out. A hard copy will minimize errors. On your sheet, list the name and contact information of your neurologist. Make copies of his/her most recent evaluation including the %FVC. All this may seem excessive, but I can assure you from the "other side" that a physician appreciates an organized, well-informed, helpful, and engaged family since that helps ensure a good outcome and quick return to your home. If you would like to submit questions for a future Q & A, please send your questions to Amber Walters at awalters@alsa-national.org. Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally. |
