Q. Most long-time wheelchair users I know have had one or more hospitalizations, either for emergencies like severe urinary tract infections, or planned surgeries to deal with SCI-related issues like pain or orthopedic issues. Their stories make it sound like a hospital stay with SCI requires constantly being on guard to avoid additional complications like pressure sores, bladder and bowel problems, and non-accessible rooms. What should I plan for in case I need to be hospitalized?
A. The old saying, “A hospital is no place to be sick,” is doubly true with complexities that accompany neurological issues like SCI, spina bifida, multiple sclerosis and cerebral palsy.
According to Cat Davis, certified rehab registered nurse of the Craig Hospital SCI Nurse Advice Hotline, any long-term health issue puts a person at a higher risk of hospitalization. “Awareness of this fact and paying close attention to your health on a daily basis to try and avoid hospitalization is the best defense,” she says.
Since emergency hospitalization can strike at any time, planning ahead is the most important thing you can do to avoid secondary complications. Here are some strategies you can use:
Designate a medical advocate. A close friend or family member can represent you, communicate with hospital staff and make decisions if you are too sick to make them on your own. Have your medical advocate available if you need non-technical, hands-on help during your hospital stay.
Make a list of key medical information. Carry it with you at all times. Provide the list to your medical advocate. The list should include:
• Injury level or disability, level of sensation and movement, past medical procedures and/or problems
• Secondary complications such as autonomic dysreflexia, spasticity, chronic pain, osteoporosis, etc.
• Doctors’ names and contact info
• All medications, prescription and over-the-counter
• Allergies — include food allergies and medications you have had a bad reaction to, as well as anesthesia
• Methods of bladder and bowel management
• Completed and signed advance health care directive. Provide a copy to your doctors and medical advocate. An advance health care directive is a document that describes the health services you want to receive if you are no longer able to make decisions regarding your care. Craig Hospital suggests starting with the “Five Wishes Advance Directive.” Also, download and complete an advance directive for your state, as regulations can vary in different states (see resources).
Medical information listed above is crucial, especially in an emergency, says Dr. Jon Arnow, an ear, nose and throat specialist from Reno, Nev. In 11 years as an L1 para, Arnow has had multiple hospital admissions ranging from planned surgeries to emergency admissions for bowel obstructions. “I’m a very well known doctor in my town, and still, if I end up in an emergency room, I’m just a number,” he says. “It is incumbent on me to be articulate and explain my situation — injury level, level of sensation and movement, long-term chronic pain history, medications, allergies, current and past medical problems — so doctors can properly diagnose and treat me.”
Another important factor is choosing the right hospital, starting with the best doctor for the condition or procedure you are having, says Arnow. See Craig Hospital’s “20 Tips To Help Prevent Medical Errors” (in resources) for more on this.
Next, find a hospital with an accessible room, if possible, meaning the room is ADA compliant, especially the bathroom — more likely in newer and/or remodeled hospitals. In his 48 years as a paraplegic, NEW MOBILITY editor Tim Gilmer has had 11 different hospital stays in seven different hospitals. It wasn’t until his last stay, in 2012, that he had an accessible room. “Not only was I more comfortable, I was much more independent and less stressed, and it gave me a psychological boost,” he says.
Another crucial hospital-stay survival tool is communication — providing feedback on how you are feeling, voicing needs, questions or concerns. The most effective way to do this is to be polite. “Greeting a doctor, nurse or staff member with, ‘How’s your day going?’ is a great way to set up a bond between you and the staff,” advises Arnow. Davis adds, “Hospital professionals are people, too. Making angry demands will put them on the defensive, while making a positive connection with them will work in your favor.” She suggests saying, “I have a question/concern about this. What do you think?” This helps put health care workers in your corner.
Be vigilant about skin issues! Arnow explains that medical staff on a non-SCI hospital floor are not educated in the kind of skin care people with SCI require. Hospital beds have hard-coated mattresses covered by sheets that are often coarse. Immediately request padding, and if need be, request being turned on a regular schedule. “One of my first orders of business is letting the staff know I need to have some type of padding, either lamb’s wool, a pad or a pressure-relieving air bed,” he says.
Make sure hospital staff understands your bladder and bowel management program. Bladder management is especially important if you are hooked up to an IV line because it may be adding extra fluids to your system.
Gilmer adds that it is important to make sure your records are properly recorded. In this era of electronic records, this is even more important since records are widely distributed. “When nurses come in to check your vitals, ask them what they are, and ask them to please read back what they have entered,” he says.
To avoid medication mistakes, ask what a medication is before taking it. Even more important, don’t allow an IV bag change, addition or injection until the nurse explains what it is and its purpose. Again, this can and should be done on a polite basis. If a medication doesn’t sound correct or you have questions, ask to speak with a doctor about it. Nurses should appreciate this because it helps them avoid medication mistakes as well.
By nature hospitals are pooling places for germs, including antibiotic-resistant germs. To avoid secondary infections, make sure staff and visitors wash their hands when they enter your room. Davis says staff should wash hands when entering and leaving your room. If they don’t, it is reasonable to ask them to do so, or to put on surgical gloves.
Last but not least, have the staff put a sign on your wheelchair saying it needs to stay within reach of your hospital bed. If you don’t, it may end up out of reach when you need it to go to the bathroom.
Following these tips will help avoid secondary complications and enable you to get healthy enough to go home — where you can relax and get the rest you need to fully heal.
• Five Wishes Advance Healthcare Directive, www.hopehcs.org/fivewishes
• Surgery After SCI, www.craighospital.org. Click on “SCI & TBI Health Info,” then “Education Modules,” then “General Health care,” then “Documents.”
• 20 Tips To Help Prevent Medical Errors, www.craighospital.org. Click on “SCI & TBI Health Info”; “Education Modules”; “Medical Team”; then “Documents.”
Advice in this column is supported by Craig Hospital’s SCI Nurse Advice Line, a toll-free hotline for people living with SCI, a community service partially funded by grants from the PVA Education Foundation, Craig H. Nielsen Foundation and Caring for Colorado Foundation. For non-emergency nursing information about SCI health, call 800/247-0257 between 9 a.m. and 4 p.m. Mountain time. If you have a health question, contact Bob Vogel at firstname.lastname@example.org.