I knew things had gotten desperate for my brother Andy when he asked me to hold his handgun for him. Two months before, he'd injured his back at a scouting event. A burly 34-year-old volunteer scoutmaster, he didn't mind letting the boys tackle him-but the last time he stood up from beneath the pile of children, Andy felt a twinge in his back. It soon became painful for him to get out of bed. One day his legs, weakened by the intensifying pain, buckled and he fell down the stairs. He'd started a job as the dietary director at a nursing home several months before. When he called in sick he was fired, two weeks shy of qualifying for medical insurance.
Unable to pay his rent, Andy lost his apartment. I invited him to move in with me. He couldn't drive, so I did his shopping, cooked for him, and even tied his shoes. Two months after his accident, despite multiple chiropractic adjustments, two steroid injections, and prescriptions for oxycodone, ibuprofen, and methocar-bamol, he still had no definitive diagnosis and his pain had become so excruciating he could hardly walk, even with a cane. He confided to me that it had become difficult even to urinate and move his bowels.
One Friday afternoon he fell and struggled for a long time just to get back onto the couch. He was running out of options. He'd been to the pain clinic two weeks before, where they'd demanded payment up front because they were having trouble with the accident insurance provided by the Boy Scouts. They had agreed to see Andy only after I'd called their parent company's internal ethics hotline.
"Tess," he said, "I can't begin to explain how much pain I'm in right now. All anybody thinks about is whether the insurance will pay. I don't know if I can take this anymore."
That night I took him to an ED in Albuquerque. As we sat in the waiting room, Andy shifted his weight from one side of the chair to the other. "I just wish the pain would go away," he said with tears in his eyes.
When Andy's name was finally called, I asked the staff nurse for a wheelchair. We were led to an examination room. A few moments later a physician came in, introduced himself, and began to lecture my brother. "You should know that this is an improper venue to treat chronic back pain," he said. "This should be followed up with your primary care physician."
I had just completed a course in nursing ethics and remembered the many case studies and discussions. "Excuse me, Doctor," I said, trying to be calm but resolute. "This is not a chronic condition. My brother has been in acute pain for weeks now. He has been to the pain clinic twice, with no results. He is losing function in his lower extremities, he has uncontrollable pain, and I believe he needs a neurosurgery consult. I suggest you examine my brother because we will not be leaving tonight. He needs treatment under the Emergency Medical Treatment and Active Labor Act."
I also mentioned that I was an LPN in training to be an RN and that my other brother was an attorney. The physician immediately examined Andy. He ordered iv pain medication and requested that the on-call hospitalist see him. At 3 am, the hospitalist admitted Andy to the surgical floor with a diagnosis of uncontrolled lumbar back pain with sensorimotor issues.
When Andy was moved to his room, his admitting nurse gave him some advice: "Don't let them discharge you until they get your pain under control and find out what is going on with you. That is your right as a patient." I was in the Navy Reserve at the time and needed to leave in a few hours for weekend drill, so I was very relieved that Andy would be in good hands.
The neurosurgeon saw Andy in the morning and discussed surgery with him. He told my brother the surgery wouldn't give him a new back and that he might need further treatment in the future, but it was his best option.
On Monday morning, Andy had surgery. By then, I'd been released from reserve duty and was back at Andy's side. A partial discectomy of L5-S1 was performed. Andy said that as soon as he came out of surgery, he felt no more pain.
I'm proud that I knew enough to assert Andy's rights as a patient, but I can't help wondering how many patients just as desperate as Andy have no one to be advocates for them.