My late daughter, Katherine Eileen Hallisy, was 5-months-old when she was diagnosed with malignant tumors in both eyes. We knew cancer would be a formidable enemy. But we did not expect to fall victim to medical error, misdiagnosis and fragmented and chaotic care.

I learned the hard way how to protect my daughter. Once, when Kate developed worrisome signs after a biopsy, our discharge papers directed us to contact the emergency room. Staffers there did not expect to be contacted for follow-up, and advised use to stay home. We missed an opportunity to identify the early signs of life-threatening sepsis, which caused my daughter tremendous suffering.

We learned that we had to ask the right questions at the right time, to communicate effectively with providers, and to take steps to avoid errors and infection. It was Kate who suggested that we share our hard-won knowledge with others so they could avoid many of the problems she faced.

My promise to Kate eventually led to our nonprofit, The Empowered Patient Coalition.

Now I speak to hundreds of patients, and on their behalf at conferences around the country. There are about 80 million surgical procedures a year in this country, and unfortunately, many patients do not realize that there are practical steps they can take to help ensure a successful surgery. That’s why I developed five recommendations for patients to consider when considering surgery:

 

  1. Deciding on Surgery. No surgery is risk free. So do you know why surgery is needed? You should be clear about how successful the surgery is in correcting your specific condition. Ask if there is medical evidence that supports surgery over other treatment options. What should you expect if you decide not to have surgery?
  2. Choosing a Surgeon. Ask if your surgeon is board-certified in the specialty you require. Check to see if she is a member of the American College of Surgeons and the American Board of Medical Specialties. Check to see if your surgeon has any medical board disciplinary actions. Ask your surgeon how many times he has performed your specific surgery. What have been the outcomes? What is the complication and infection rate? Demand specific answers and not vague generalizations like “not many.”
  3. Surgical safety. Will your surgeon be performing your entire surgery? Will she be assisted by other surgeons, residents, or students? How much direct supervision will doctors-in-training receive? I learned the hard way to ask these questions after surgical residents operated on my daughter instead of the senior pediatric orthopedic surgeon. There were no complications, but I was alarmed. Patients   need to be completely clear about the identity and the experience level of their surgeons. Be sure the surgeon signs your surgical site and confirm the location by adding your initials as well. Ask your surgeon if she will take a “time-out” in the operating room to confirm the right patient, the surgical site, and the correct procedure. Ask if the team uses a “surgical checklist” to ensure that important safety protocols are followed.
  4. Preventing infection. Patients play an important role in preventing infection. Ask if you need antibiotics before surgery and remind the staff to administer them. Inquire about using a pre-surgical body wash in the days before surgery to lower the bacterial count on your skin. Do not shave your surgical site in the 24 hours before surgery to avoid making cuts in the skin where bacteria can enter. Try not to touch or scratch your surgical site and keep your hands clean by washing with soap and water or by using a hand sanitizing gel.
  5. Recovery and home care. Be sure that pain and nausea are controlled, because they can delay healing. If you are receiving narcotic pain medications, be sure your vital signs are closely monitored since a bad reaction may lead to hallucinations, nausea, or labored breathing. Pay close attention to your discharge instructions and be clear about your medication schedule, when to see the doctor for follow-up, and when to remove bandages or bathe. Ask if you need any medication to prevent blood clots.

 

For more information, see our free Hospital Guide for Patients and Families.