If you're chronically or seriously ill, tending to self-care needs is never easy.
Putting on that hospital gown and wristband and other seemingly easy tasks can become daunting. Getting a second opinion, figuring out what your insurance covers, and researching your treatment options can be a struggle when attempted from a hospital bed.
One reason, say experts, is that patients are frequently unprepared for the change in routine and the lack of resources available in their new environment.
"Once you're admitted, a lot of the options you relied on to help you make health care decisions -- like the Internet, or even your personal computer files or your address book -- are suddenly not there. And that can leave you more than a bit disoriented," says Sandy Burke, the director of patient representatives at NYU Medical Center in New York.
Complicating matters further, she says, is the state of high anxiety that usually accompanies most hospital stays.
"The emotional state is so high on the part of the patient and oftentimes the family that even if the procedure or treatment is elective, most people don't even think beyond getting through the operation," says Burke.
Although no one knows when an acute problem will strike, or when a chronic disease or condition will suddenly worsen, experts say that taking a few simple steps to prepare and organize at least some of your health care needs can help keep you in the driver's seat, if and when the time for hospitalization arrives.
What follows are four steps that experts tell WebMD will make a difference.
Step 1: Get to Know Yourself
Whether you have a chronic condition -- or you're simply getting on in years -- experts say one of the best things you can do for yourself is become familiar with what your future health care needs may be and how your personal needs may change as a result. The best source for this information: your doctor.
"About 10 years ago, my mother sat down with her doctor and had a meaningful conversation about not only her health, but the whole idea of growing old -- what to expect and how to prepare for that," says Lyla Correoso, MD, medical director of the Visiting Nurse Service of New York's Bronx Hospice Program.
As a result, she says her mother not only knows what to expect from herself and her body as the years pass, but is also better prepared to make health care decisions when the time arrives. She is also better able to discuss her needs with family members.
"In the event my mother finds herself in the hospital not only will she be better prepared for the experience, but our whole family will be better prepared to help her, because we have some sense of what will happen and what she wants and needs," says Correoso.
Burke says it's especially important to have this heart-to-heart talk with your doctor if you have health problems that could worsen significantly over time.
"You not only need to know what to expect, you need to discuss the range of treatment options that are open to you should your condition worsen, " Burke tells WebMD.
In the event that you have to make choices, she says, it's infinitely easier to make the right one if you can draw on previous knowledge about your options.
Also important: While you're talking to your doctor, discuss the task of overseeing your medical care should it become necessary for more than one expert to become involved.
"Sometimes a patient will just assume that their internist or even their specialist will take charge of their hospital care, but this doesn't happen automatically," says Burke.
If this is what you want, she says talk to your doctor beforehand and make sure she or he agrees to play an advisory role, even if your treatment involves other specialists.
Step 2: Make Friendships Count
Whether or not your personal doctor takes charge of your care, experts say you cannot underestimate the importance of having an additional source of support in the form of a friend or relative who can be your health care advocate during a hospital stay.
"It's vital to have someone you can trust to keep an eye on what's going on, to help you make decisions, and to ensure the decisions you make are being communicated properly to those caring for you," says Correoso.
And, she says, you and your friend need to prepare for this as much in advance as possible.
"Have a detailed discussion with the person you choose as your health care advocate, ideally long before hospitalization becomes necessary. And even consider making a written list of what you do and do not want your care to include," Correoso tells WebMD.
Then, she says, trust that the person you have chosen will follow through on your behalf.
"People are funny sometimes. They say they want to trust someone but in reality they really only trust themselves, which is why it's important to choose someone you feel comfortable with and who you can trust. And then trust them!" says Correoso.
If that person is not able to help you when the time comes -- or if you simply don't have anyone to rely on -- Burke tells WebMD that nearly all hospitals have a hierarchy of staff members who can advocate on your behalf.
"It starts with the patient advocate, and most major hospitals have them. And they can not only help you to mediate your grievances but also help to make certain that your rights as a patient are being respected," says Burke.
Step 3: Learn Your Rights
When it comes to preparing for a hospital stay, experts say perhaps nothing is more important than realizing you do have rights as a patient. And taking the time to learn what they are can serve you well in many situations.
Among the most important of those entitlements, says Burke, is the right to receive an explanation of any treatment being prescribed, and the right to ask for that explanation as many times as necessary until you fully comprehend it. Also important to note: You can ask for that explanation in your native language, even if you speak English.
Perhaps most important, says Burke, is to remember every patient has the right to refuse any treatment -- including tests.
"If you don't understand why a test was ordered, or why a medication was changed, or you have any question at all about your care, you have the right to refuse that care until you can find out more. And very often it is the patient advocate who can intercede and get you those answers, if you just reach out to them," says Burke.
Step 4: Plan Ahead
While ultimately your hospital stay may go smoothly, experts warn that few patients are prepared for what happens when they return home. Common sense dictates we won't be discharged until we are well, but over the years the very definition of that word has changed, and dramatically.
"People don't expect to leave in pain, and very often they do. They don't expect that they are going to have to find a lot of their postoperative equipment on their own -- like a hospital bed or a commode -- and they do. And all of this can be doubly difficult if you are unprepared," says Susan Reinhard, co-director of the Rutgers Center for State Health Policy, specializing in empowering health care choices for consumers.
Indeed, while even routine medical events -- like having a baby -- once came with a minimal 10- day hospital stay, Reinhard tells WebMD that today, patients having even the most difficult and complex surgeries are often discharged within three or four days.
"Recuperation that used to take place in a hospital must now take place at home, and patients need to be aware of that, and to be aware that they will likely be going home long before they themselves feel they are ready," she says.
While admittedly it's difficult to prepare for a hospitalization that is unexpected, Reinhard says if you have a chronic illness or you're simply getting on in years, it's important to focus on what your daily needs are, and think about how you'd cope if you weren't functioning at full capacity.
Then, she says, try to figure out ways to compensate and make whatever arrangements you can before going into the hospital.
"If your hospitalization takes you by complete surprise, then use as many hospital resources as you can, including social workers and patient advocates, to prepare for your homecoming," says Reinhard.
If you think you will be unable to care for yourself when you do get home, Burke says ask about rehabilitation facilities or even nursing home care, until you can get back on your feet.
Most important, say all our experts: Be tip-of-the-tongue familiar with what your insurance policy covers, and make sure you can quickly lay your hands on all documentation if needed.
Says Burke, "The more you know about what to expect before you are in the hospital, the easier and more comfortable your hospital stay, and your recuperation, will be."
