When someone you love is in the hospital, don’t go to visit!
That’s right. Families should not think of themselves as visitors in the hospital room. Families—or sometimes very close friends— bring a wealth of information, background and understanding. They know their loved ones better than anyone else in the hospital.
That counts for a lot, especially nowadays when hospital patients are less likely to have their personal care physicians overseeing their case and more likely to have hospitalists— doctors who work for the hospital but don’t necessarily know the patients very well.
My husband has been hospitalized 14 times – some relatively minor episodes but most more serious and several involving life-threatening circumstances. One of the things I learned as his advocate is that my role is as important as the doctors and nurses. It’s just different. I don’t pretend to have any specialized medical training or skill. I don’t substitute my judgement for that of the doctors. They went to medical school; I didn’t. But I know my husband, as you know your loved ones. And here are some things I can honestly share:
Advocates are historians. Doctors and nurses don’t always know a patient’s full medical history, preferences and concerns, especially if there is a lengthy record of illnesses and past hospitalizations. Electronic medical records may be incomplete or even inaccurate. It’s a good idea to check the records at the time of admission and again during the course of hospitalization, especially if the stay is a long one.
Advocates can serve as the eyes, ears and voice for the patient who is too sick to speak up for him or herself. Sometimes patients don’t remember everything the doctor has to say. And sometimes they are unable or unwilling to share information that is embarrassing or they think is not relevant. Doctors often appreciate the details that advocates share; the right background information can affect diagnosis, prognosis and treatment options.
Advocates can run interference, tracking down doctors and nurses who are difficult to reach. They can connect the dots, making essential links between and among health care professionals who don’t always communicate well with one another. And they can elevate problems or concerns to higher levels in the hospital if necessary to get results. Advocates should generally work within the system and go up the food chain to reach the right person. But sometimes, under extraordinary circumstances, you have to take a bold step to ensure your loved one gets necessary care. Let your instincts combined with your common sense guide you.
When the patient goes home, continued care must involve the family to ensure instructions are followed regarding medication, follow-up visits, exercise, restrictions and other aspects of recovery. Discharge from the hospital can be a rushed event, with a nurse reading instructions as the patient is wheeled down the hall. Better to take your time and go over the information calmly and completely to be sure you and the patient understand directions completely. Too often readmissions occur because instructions were confusing or not properly understood.
To make the most of what families can offer, it would be wonderful if doctors routinely invited them to be part of the discussion and to participate in the decision-making process –not wait for them to speak up. Sometimes that happens; just as often it does not.
Either way, the advocate can and should interact proactively and professionally with the medical staff in coordination with the patient, or on behalf of the patient if necessary. It’s a two-way street. Doctors and nurses should be treated with respect; patients and their families should get the same in return.
To help set the stage for mutual consideration, you—as the advocate—can do a little research to understand the diagnosis so you know what you are talking about. It also means understanding that the doctor’s time is limited, so have your questions ready and be prepared to take notes for follow up. By the same token, you deserve to have legitimate questions answered, so don’t be shy about insisting on scheduling time, if necessary, to meet or talk with the doctor later.
Being professional also means keeping your cool. Try not to cry or become emotional. If you are frustrated or angry, channel your feelings constructively; don’t yell or get into an argument. It is better to be persuasive than demanding. Easier said than done? You bet. But a calm, reasonable demeanor will go a long way toward building a successful working relationship with the doctors and nurses.
Speaking of nurses, remember that they are trained health care professionals, often with years of education and experience. They are experts in patient care and usually an advocate’s best friend. Treat them with the respect they deserve, just like the doctors. Don’t push the call button for things you can do yourself for the patient such as refilling a water pitcher, wiping a fevered brow or finding the television remote.
If this sounds like a lot of work, it is. But the effort is well worth it. Research shows that patient and family-centered medicine provides the best clinical outcome, increases patient satisfaction, lowers costs, reduces risks of readmission and can save lives. So go to the hospital prepared to participate as a member of the care team. You have a lot to offer and you just may help save your loved one’s life.