Practical Means to Being Your Own Best Caregiver
By Marie Savard M.D.
MainLine Life
May 24, 2000

When I started out as a nurse more than 10 years ago, the hospital was a place for people to rest and recover from illnesses. The average hospital stay was over one week. Nurses were plentiful, and private duty nurses were only for the wealthy.

Today, because of tremendous cost-cutting measures, patients are admitted to the hospital only when absolutely necessary and for as short a time as possible.

The nursing staff has been partly replaced by non-professionals. Resident or "house" doctors called "hospitalists" often take over for the family doctor. The recent Institute of Medicine's report titled, "To Err Is Human," claiming up to 100,000 deaths per year from hospital mishaps, was disturbing.

I could take up this whole column bemoaning the sorry state of hospital care, but it wouldn't solve anything. In the meantime, there are practical things you can do that will give you or your loved one the best care possible under the circumstances.

Some things you must do:

• Come armed with as much medical information as possible. Bring all your medical records, list of medication doses and directions, allergies and living will. Let me stress the importance of keeping your own medical file, including copies of laboratory tests, X-ray reports and doctor consultations. Don't count on the doctors having ready access to your past medical history.

• Have a friend or relative stay with you 24 hours a day - a "health buddy." My sister, my mother and I took turns being with my dad while he recovered from heart bypass surgery. You don't need to have special knowledge. Nobody cares as much as you do about your own family and friends. Your buddy can ask questions, take notes and clarify what is being done and why. As the patient, you may think of this as a burden to your family or friends. Trust me, in time of need, your family and friends will only be too glad to know what to do to help out.

• Identify the doctor in charge. On a typical day, you may see your family doctor, many specialists, your surgeon or anesthesiologist - and an ever-changing cast of staff. Conflicting information is not uncommon. You need a point person to explain what is happening and answer questions; usually that person is the doctor in charge of your case, the attending physician. Ask your nurse who this person is and get his phone number. Learn when they make hospital rounds and make plans to be there to ask your questions.

• Help the nursing staff. Each day your assigned nurse will get a "plan of care" listing dietary restrictions, the tests scheduled, medications and other special orders from your doctor. Ask the nurse to review the plan of care and medications with you. Take notes if you need to. I knew my dad was not to eat before a certain test and reminded the dietary person who mistakenly brought him a meal. Keep your own "progress notes" listing your observations and questions in a tablet at the bedside for everyone to see.

• Help with discharge planning and get a copy of your discharge summary. Patients are often sent home from the hospital still sick with new and complicated treatments. Make sure you understand exactly what you still need to continue to help your loved one get better. Talk to the doctor(s), your nurse and even a pharmacist if you are taking new medication. Ask if you should resume the old medication you were taking before coming into the hospital.

• Don't hesitate to ask questions and have your answers recorded (with permission) or written down. Your attending doctor will dictate a complete report summarizing the reason for your hospital stay, any treatment and test results. Ask your doctor for a copy of this discharge summary and give her a self-addressed stamped envelope to remind her of your request. Ask your surgeon for a copy of the operative summary for your files as well.

• Ask for copies of important tests or findings such as EKG blood work or X-rays. They may be important to your doctor in case of a problem after you go home, especially if you were not seen or treated by your family doctor while in the hospital. My friend insisted on a copy of her sister's EKG and heart catheterization report upon leaving the hospital because she was admitted to the hospital on an emergency basis while on vacation. She developed chest pain while en route, and the doctors helped her doctors know how to treat her. This information may have saved her life.

Many, many thanks.

Back to list of press clips