Not long ago, when my father was about to undergo a heart procedure, I hinted to the cardiologist, a colleague, that I wanted to be there, too, not just to offer comfort but also to be present for the play-by-play that would lead to a critical decision: whether to open his blocked arteries with a stent or to perform bypass surgery. Draped in an X-ray-shielding body suit over his blue scrubs, the doctor hesitated.
I understand why.
I?ve stood in his shoes and listened to family members say they want to be present 24/7 with their loved ones, often in the most challenging of hospital environments, such as the intensive care unit.
And initially ? like many of my colleagues ? I was hesitant.
An ICU room is filled with lifesaving equipment ? ventilators hissing, monitors beeping, red and green lights flashing ? around which doctors and nurses carefully maneuver. If families are there, the nurses must keep a watchful eye to make sure that no equipment is moved. ?Nurses like to be in control of their work environment,? an ICU nurse manager told me.
Moreover, in the ICU, a family member could become distressed to see their loved ones bucking the ventilator or bleeding from a fresh wound.
However reluctant we doctors may feel, ?patient-centered care? ? in which patients and families are involved in shared decision-making ? lies in our future. It is one the six goals of the Institute of Medicine in redesigning the American health-care system, along with safety, effectiveness, efficiency, equity and timeliness. And under a new payment scheme, launching in 2013, hospital payments will be based in part on surveys that ask patients and families how well the doctors and nurses communicated and if they were responsive to patient needs.
Over the past year, the ICU at my hospital has been field-testing a more open approach. We are not the first to do so. Geisinger Medical Center in Danville, Pennsylvania, went to an open ICU policy nearly a decade ago, found it extremely disruptive and soon reverted to only 30 minutes of visiting six times a day. On a second attempt, however, Geisinger developed an extensive communication program for both families and staff, and open ICU visitation has been successful since 2003. A 1997 study found that open ICU visitation practices had a beneficial effect on 67 percent of patients and 88 percent of families.
I am surprised by how well the open policy at our hospital has worked over the past six months. I have become comfortable seeing family members stretched on recliners in the ICU during my early-morning visits. They update me on how the night went for the patient. One ICU specialist said, ?I don?t have to chase down families to update them on what is happening.?
Some ICUs are also inviting families to participate when a team of a dozen professionals, including doctors, nurses, pharmacists and social workers, decide on the plan for the patient.
?I?m not sure that is such a good idea,? one cardiologist told me. It was 8:30 in the evening, and he still had not finished seeing his patients.
I understand his reluctance. During rounds, doctors and nurses exchange medical jargon and spew numbers like auctioneers. Would family members understand what it means when we say their loved one ?needs a cabbage? (a coronary artery bypass graft, or CABG)? Would the team hesitate to talk about potential causes of an illness such as HIV or cancer, or to refer to ?an extremely poor prognosis??
I think back 15 years, when my father had his first catheterization and angioplasty. His heart stopped, and he began to scream. I wasn?t there with him, but I?m fairly certain I could have contained myself. But my mother, not a medical person, says she would have found it very upsetting.
His distress, her reaction, my need to comfort them both ? it would all have disrupted the team focused on threading a wire in a clotted artery.
And what if patients and relatives want to photograph or video a doctor visit? One in seven patients experiences an adverse event during a hospital stay. Inviting families to be with their loved one during rounds will mean that lawyers will have a field day, one internist told me.
Steve Bergeson, medical director for quality at Allina Health Systems in Minnesota, told me that doctors and nurses are afraid that ?families will find out that something went wrong and will be upset.?
I asked the ICU nurse manager at my hospital what nurses do when the family is in an ICU room and something goes terribly wrong, like a patient requiring CPR. ?We ask the family to step out,? she explained, ?and if they want to be present in the room, one of the nurses stands to the side with them and explains what is happening.?
In pediatrics and childbirth, we are far ahead in patient-centered care. No one hesitated when I said I wanted to be with my wife for the delivery of our children, even when things went bad and the obstetrician had to pull my daughter out with forceps to find the umbilical cord wrapped around her neck six times.
While most doctors now accept open visitation, having family members present in the cath lab remains a challenge. My request to accompany my father was a further step in the new culture of patient-centered care. One cardiologist told me, ?I would never allow that. . . . The family has to have a level of trust in me as their doctor. They don?t need to be there to watch over me. I earn their trust before the procedure, and if they don?t like it, they can find another doctor.?
Listening to him, I reflected back on my experience. While my father lay on the cath table covered to his chest with a white sheet, his cardiologist hesitantly agreed to have me watch from the glass-walled control room. He made an exception for me because I am a colleague.
I watched as the doctor threaded the catheter up the artery from my father?s groin. In a snakelike movement, the catheter found its way to his chest and then spat out dye, which dissipated into the heart like black smoke and seeped into the clogged arteries.
Then the cardiologist straightened up, took off his gloves and came to the control room. We conferred on the call. ?I think we can do a stent,? he said. I agreed, went over and took my father?s hand and told him the plan. ?Whatever you think right,? he said.
The more I think about it, the more I realize that movement toward greater transparency is a journey each health system, its medical staff and its patients have to make at their own pace. It cannot be mandated by a federal agency.
Health care is not like a business that can be governed by the simple adage that the customer is always right. But those of us who work in that system should think of every patient as an individual and respect his or her needs and wishes ? a goal that I heard most forcefully expressed at a conference about a decade ago:
?Nothing about me, without me.?
Jain is an infectious-disease physician.
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