JUST AS no accused person should go to court without a lawyer, so no patient should enter a big-city hospital without a family member or close friend prepared to look after the patient's interest and to speak up when necessary.
There are at least three good reasons to have a Significant Other present. One is that today's specialized doctors seem to know more than ever about, say, the spleen but less than ever about the patient as a whole, as a person. The second is that nurses are in short supply and often are too overworked to give patients the attention they used to get. The third is that some medical tests and treatments have become so high-tech and invasive that a patient may need to be guarded against them.
I had no idea I might become a patient's ombudsperson when my late husband, Jonathan Bingham, a congressman from the Bronx, was put on a respirator because of six weeks of fever and coughing. I was by his bedside when a white-coated man appeared, identified himself as a thoracic surgeon and said he had been asked to do a surgical lung biopsy.
Since Jonathan, because of the tubes, could not speak, I asked how this differed from a recent bronchoscopic exam that showed he did not have lung cancer, tuberculosis or bacterial (i.e., treatable) pneumonia. The doctor ignored my question but explained instead that Jonathan would be given general anesthesia and have his ribs forcibly spread and a chunk of lung removed. I rose to my full height and demanded: "What can you find by this procedure that is treatable?" The doctor turned and marched out. After an hour, two nurses came to give Jonathan's a different set of antibiotics. The biopsy, it seemed, had been canceled.
The next morning, Jonathan's fever was gone! The new antibiotics, we found out, were used to treat Legionnaire's Disease. The doctors were frustrated because, without the biopsy, they lacked full scientific proof that Jonathan indeed was afflicted with Legionnaire's, but Jonathan and I were elated. Yet if I had not been there to ask that obnoxious question, Jonathan would have been further weakened by anesthesia, invasive surgery and rib pain.
In the old days, family members needed to be on guard against medical personnel saying or doing too little. But today the problem may be medical personnel saying or doing too much.
One day, for example, I arrived to find a resident doctor putting a splint on Jonathan's right arm. He said that they were having such trouble drawing arterial blood for oxygen tests that he was inserting a shunt. "Will he be able to write with that splint on?" I asked. The young doctor shook his head.
"For God's sake," I said. "you can't remove his only means of communication."
The doctor gave me an irritated look but the patient nodded approval, and an intern later drew the blood without a splint. I remained so angry, however, that I couldn't sleep. The role of watchdog was getting to me -- yet I couldn't help thinking how lucky I was to be present and able to help my spouse of 46-plus years. The day before Jonathan died, he was in a stupor. I was by his bedside when two of the nurses asked if they could speak to me. I nodded. "We just wanted you to know what a privilege it's been to care for him these past six weeks -- and what an inspiration to see you here every day."
"But where else would I be?"
They were surprised by my surprise. "Look around you."
And it was true. Not one patient nearby had a visitor -- and most of them never had had any. "Where is everybody?"
"The machinery, the noise, the atmosphere of crisis. Many come once and never again."
Later I spoke to the doctor in charge. She agreed with the nurses, adding that perhaps the visitors who did not visit were also afraid of death, their patient's or even their own.
"What can we do?" I asked.
The net result is a new corps of volunteers in New York's Presbyterian Hospital. It's called T.L.C. for Trained Liaison Comforters. We serve in the intensive-care unit's waiting room, to be there for family and friends of patients. We provide an ear to listen, a shoulder to cry on, a hand to hold. We also provide a pair of legs with which to enter the ICU and find out when their patient can be visited, for often during crises the intercom from waiting room to ICU is not answered and the visitor is left in agonizing limbo.
Volunteers also help by informing visitors about the many services the hospital offers. It may be a social worker for the mother of an AIDS patient too weak to sign over to her his food stamps; or it may be the patient-relations department for a notary or emergency housing; another time it may be a pastor.
For the program, too, we have prepared a photo-filled brochure, "You and the I.C.U.," which will be distributed nationally by the Foundation for Critical Care based in Washington. The pamphlet de-mystifies the sometimes shocking sights and sounds of the ICU before a Significant Other enters. We also provide a list of nearby restaurants to encourage visitors to go out for a bite and breath of air.
One of our hopes is that, with our encouragement, a patient's visitors will want to return to the ICU and keep adding their energy to that of the staff in helping their patient to heal. Another hope is that in due time some visitor will join our ranks, thus perpetuating the program. But day in and day out, we are there to help family and friends, and through them their patients, during a time of uncertainty and fear.
One day I was struggling in my limited Spanish to communicate with a large family from Santo Domingo whose relative was dying. Their tickets home needed to be changed, and an ICU doctor had to write to the airline. After getting the letter for them, I slumped on a nearby chair. A son-in-law came over and handed me $2 with which to buy myself something from the vending machine. I demurred but he insisted, and I finally thanked them and said I would use money for "la programma."
June Bingham, a New York author and playwright, is working on a book about political marriages.