Eleven years ago I lost my father, who was a surgeon. He was 84 and managing Padgett’s disease, a condition that destroys soft cartilage in the spinal cord causing nerves to pinch between the vertebrae causing acute pain. He had decided to get two stainless steel rods placed aside 8 fused vertebrae to stabilize the spine and try to reduce the pain.
Shortly afterwards he had another surgery to install a pump for pain medications, but when he got home the pump malfunctioned. Returning to the hospital he had a fever and was diagnosed with spinal meningitis, which had been introduced at the surgical site. I remember one day while a nurse was preparing his insulin injection he looked at me said, “She is not following sterile procedure by wiping the top of the vial before inserting the needle”. She proceeded to give him the injection anyway. Long story short, after two and a half months we finally got him home-- too weak to eat and on a feeding tube that had been installed by a GI physician at the hospital.
Three months later dad diagnosed himself with an ulcer. When the endoscopy results came in it showed the feeding tube peg installed in the stomach wall three months earlier had never been removed. He was admitted back into the hospital and almost immediately contracted MRSA, another hospital born infection, and died within 24 hours.
The lesson here is to take active control of, and know, what care is being delivered to you or a beloved family member. If a physician cannot tell you who is in charge then no one is in charge and you are in danger. Never in our history has a healthcare advocate been more important. Each person needs to have a living will and clearly tell those who love them what care to withhold if brain function has ceased or been degraded. If a living will is not provided a hospital will take heroic actions to treat a patient, regardless of what the family is requesting. And palliative care is extremely expensive. Another important lesson is: don’t shirk from your responsibility to define life ending care.
My advice is find a physician or nurse-reviewer advocate willing to review, question and highlight dangerous, repeated, or ineffective care outside of the norm – especially in hospitals with overworked, and poorly supervised medical staff spreading dangerous pathogens. Ask your hospital for their infection rates, and avoid places that are mismanaged. Failure to find effective medical advocacy can cost you your life.
Lastly, our advanced and extremely expensive healthcare system provides enormous live enhancing options but new treatment options can be complex, and may include side effects which must be weighebefore treatment.
Coordinating care is the patient’s responsibility to manage. Assignment by the hospital of a “primary care coordinating physician” is not a given. And dealing with physicians who take exception to being second guessed by nurses or non-medical personnel is a delicate balance that requires vigilant attention. Your life may depend on it.
Complex problems don’t have simple solutions however we do have solutions that can and do save lives and they must be adopted.
- George is CEO of Provider Risk, LLC