Thomas B. Newman, MD, MPH

December 7, 2000; Revised January 26, 2003

Many of the patients admitted to the Gold team are neurologically handicapped; some severely. Learning from them and making a difference in their care is challenging. Some reasons for this are.

• We're all busy, and we'd like to invest our time where we can make a difference. Nothing we do is likely to help these patients walk, talk, or eat normally, so there's sometimes a sense of low return on time invested.

• They have long, histories going back many months or years and many admissions, and we are going to interact with them for a relatively brief time. The benefits of knowing the story behind their whole problem list (e.g., history of their seizures and anticonvulsant treatment; history of the GE reflux and its treatments) may not be worth the time involved, especially if others (primary care providers, consultants) will be making these decisions.

So how can you actually make a difference?

1. First do no harm. One big way you can make a difference is not making things worse! Therefore:

• Be very careful about hand washing and other infection precautions.
• Remind others to wash their hands, too, especially when a group comes in to learn physical diagnosis
• Be very careful about checking doses of medications and possible interactions of any new medications

2. Treat patients and families with kindness. Parents of these children are a remarkable group of people. Hospital admission can be an acute stress or offer them a much-needed breather. Some specific suggestions:

• If your are the first person from the team to see the patient, write your name and the names of all team members and leave that list with the family. If consultants are involved, write down their names, too; indicate who are attendings, residents, etc. Families really appreciate this.
• Always assume that the children can understand you. Introduce yourself, call them by name and explain what you are going to do before you do it. Parents, nurses, and others immediately notice if you treat patients as specimens rather then human beings, even if the patient is not aware.
• Be gentle.

3. Do a good physical examination. In addition to examining areas related to the child's acute problems, there are at least 3 other reasons:

• To identify problems that need attention. High-yield areas are the teeth and gums, skin/diaper area and joints (look for contractures).
• To notice when these problems are NOT present, so you can give some recognition to the caregiver. (E.g., "You’re doing a really nice job on his teeth.")
• To identify opportunities for teaching and learning. Many of these children have physical findings, and won't notice or mind if you take your time identifying them and showing them to others. (Always be gentle and courteous and explain what you're doing to the patient.) More junior trainees -- ask the attending or senior resident to go over the physical examination with you! Examples of physical findings you can practice eliciting, and go over with others on the team are:

• Microcephaly -- practice measuring HC
• Tympanic membranes, including motility
• Heart exam, e.g., physiologic splitting of S2
• Tanner staging -- breasts, and genital. (For children who are clearly unaware/unbothered by the examination, with caregiver permission.) Bring a book with pictures with you into the examination room, if necessary
• Neurologic exam --

• e.g., spasticity is a velocity-dependent increase in tone. It's something you feel when you flex and extend extremities; practice this and see if you can feel the tone change.
• Check vision -- how convincingly does patient follow with her eyes? I'm struck by how many of these kids carry diagnoses of cortical blindness when they unquestionably can see.

5. Insist on clarity for the goals of the child's care and make sure that orders for nursing care, diagnostic tests and treatments advance these goals. Are we doing things because the child really needs them or out of habit? Real examples:

• Does a child living at Sonoma State hospital really need growth hormone injections?
• Does your patient really need I & O's?
• Does your patient really need a sat monitor?
• If oxygen does not make the patient more comfortable (or, in fact, makes him uncomfortable, e.g, if he needs to be restrained to keep from pulling it off) what goal are we serving by restraining him and keeping his saturation > 95%?
• Does the patient really need to have his blood pressure measured 4 times a day? Does he need to be awakened for vital signs at night at all?

6. Know indications for all medications. People with chronic illness, especially if their continuity of care is poor, often collect medications and just stay on them because no one discontinues them. For all chronic medicines, (e.g. laxatives, iron, ranitidine, metaclopromide, oxybutynin, anticonvulsants, glycopyroloate, various hormones) try to find out who prescribed it, how we can tell if it's helping and what the endpoint for discontinuing it is. (The parent should be your first source for this -- if they do not know the answers you should find out and let them know.)

7. Try to minimize blood draws and other painful procedures. Instead of checking anticonvulsant levels 4 times after changing the dose, can you figure out when the best time to check it would be, and check it once? Not every child with a fever needs a CBC and blood culture, just because he is in the hospital! These children generally are not immunosuppressed -- why do they get (often multiple) blood cultures whenever they have a fever? Also, before ordering diagnostic procedures, make sure you are clear on how the results will affect your management.

These are just some of my first thoughts. Please let me know what you think about them, and also any additional thoughts and tips so I can add them to future versions of this handout!