Trips to the hospital, planned or unplanned, can be stressful for anyone, but adding diabetes to the situation may add another layer of confusion and worry. Elizabeth Bailey, patient advocate and author of the recently published The Patient’s Checklist: 10 Simple Hospital Checklists to Keep You Safe, Sane & Organized, suggests we can better manage a stay in the hospital by remembering one important, and very low-tech, tool:
That’s right, Bailey suggests preparing detailed checklists covering everything from medications to family contact information to comfort items to bring, before you’ve packed your bag. “Because,” says Bailey, “even the most empowered patients – and sometimes the most empowered patients – may lose track of their self-advocacy and identity in a hospital setting.”
“What people may leave behind when they go into a hospital setting is their own critical thinking and common sense,” says Bailey. “You know your own baseline. You know your own ‘normal.’ You know the patient more than anyone else … because the patient is you! And yet, in such a highly technical setting, people tend to leave their own humanity outside.”
Bailey speaks from firsthand experience. Her father was hospitalized long-term (he lived with type 2 diabetes but that was not the primary reason for his hospitalization). His stay was marked by a variety of errors, including confused communication and even the hospital losing her father for a short time (he’d left and gone back to his own apartment, dressed in a hospital gown). These experiences led Bailey to realize something had to be done. As an experienced video and film producer, she’d learned long ago to live by lists. Be prepared. Think things through, write it down, and constantly check it. Realizing she’d not done that with her father’s hospitalization, she decided to write a book on how to be a more empowered patient.
“For people living with diabetes,” she says, “it’s even more crucial to plan ahead, make lists, and keep everything watched over and triple-checked every moment of the hospital stay, because even more questions may arise.”
Why lists? “Checklists are like an anchor that can keep you focused on being an advocate for yourself, or for someone you love, she says. “People have a limited bandwidth in a crisis time. Checklists help.”
So what’s the first item on her checklists for patients with diabetes? Someone to be there to oversee their checklists for them!
“In my view, a patient needs someone there for you and with you,” she says. “Particularly that first night if you are staying overnight. If you don’t have family, ask a friend. Someday, perhaps you can return the favor. And include that friend in the making of your lists, so he or she can keep track and advocate for you.”
With that person knowing your medications (via the checklist you filled out ahead of time!), your diabetes care team’s contact information (also on the list), when you may or may not want visitors (pre-planned via list as well), you’ll have someone helping to make sure things go well and you stay comfortable.
Bailey’s book walks you through making those lists and more, with everything from what to bring with you to what to know before being discharged. (Many patients are so ready to get home they dash out without finding out vital information.) “Patients think that discharge means you are done, but really it is where some things begin. You have to be sure you have everything in order for that.”
Having the checklists in hand may help hospital patients focus on things like how to handle their own diabetes care as an inpatient, something that can be irksome to many. “Since diabetes patients often take on so much of their own daily care,” Bailey says, “a hospital setting can seem strange, leading some to step back when they would usually be proactive.”
Her advice? Speak up. If you think something is being done wrong or you want it done a different way, say something. Even if it feels like you are being aggressive. “Speak up and be heard.” In her father’s case, she says, it might have eased his situation. Now, her book helps that to never happen again, especially for those living with diabetes.
Moira McCarthy is an acclaimed writer, author, and public speaker who has shared her story – and lessons – on raising a child living with type 1 diabetes in the media, through books, and on her popular blog, despitediabetes.com. McCarthy has appeared on CNN Live, Good Morning America, and Fox News. She was recently recognized as the JDRF International Volunteer of the Year. Her six books include the top-selling The Everything Parent’s Guide to Children With Juvenile Diabetes and the upcoming Raising Teens With Diabetes: A Survival Guide For Parents. McCarthy is a paid contributor for The DX. All opinions contained in this article reflect those of the contributor, and not of Sanofi US, its employees, agencies, or affiliates.
© 2013 The DX: The Diabetes Experience