Sunday, August 28, 2005

Catch as catch can....
From last weeks Newsweek in the "My Turn" column comes this tale of a family members frustration with getting in touch with modern medicine: I Shouldn't Have Had To Beg for a Prognosis. It was also reprinted in today's Atlanta Journal Constitution, as the patient in the story was a reporter for the AJC.
Aug. 22, 2005 issue - I was once a stalker. My victims—yes, there were several—were high on the social scale, but they were not celebrities. They were doctors.

My husband, Doug, died recently after a sudden illness put him in an intensive-care unit for 38 days. Being new to the world of hospitals, I stumbled around blindly for days before I figured out what all family members starved for up-to-date details about the health of their loved ones learn quickly: information comes from the doctor, and in order to get that information you must be present when the doctor visits the patient each day, whenever that may be.

I understand that what with juggling office hours and visits to hospitalized patients, doctors have demanding schedules. But do they understand that when your loved one is in the hospital, the rest of your life doesn't just go away? Hospitals operate on the premise that we, the family, must make ourselves readily accessible to the doctor—not by phone but in person—or else the doctor is not accountable.

Any time you are not in the patient's room (and, indeed, the hospital prefers that you not linger there), it is assumed that you are in the waiting room. When the doctor arrives, the nurse calls to let you know. If you've stepped out to grab something to eat, make phone calls with some degree of privacy or dash home to feed kids or pets, there's a good chance you'll miss the doctor unless you've networked with others who are waiting and they are able to summon you quickly.

If you miss the doctor, don't expect him to call you later with a report on how your loved one is doing. And forget about calling him at his office. Some receptionists won't even pretend to deliver a request to the doctor for a phone call from anyone other than a patient's ICU nurse.

To make matters worse, there isn't just one doctor. My husband had eight—not uncommon with critically ill patients. Some of Doug's physicians made their rounds before visiting hours. Those I could do nothing about. Most tended to come around midmorning, but a few mavericks appeared in the afternoon or evening, varying their schedules daily. I sometimes bagged my quarry as late as 8:30 p.m.

By Doug's second day of hospitalization, I was panicky and grasping at straws. The virus that had given him breathing problems had attacked several areas of his body. I could not communicate with him: a respirator was breathing for him and he was sedated. But the cardiologist told me that Doug was doing reasonably well, and I naively took solace in this mild pronouncement. That is, until a lung specialist zipped into the room, put his stethoscope to Doug's chest and said, "He's not getting better. He's worse. He may die. Any questions?" I was too stunned to be coherent.

Later, a nephrologist informed me that Doug's kidneys were failing and he needed dialysis. I told this doctor what the prior two specialists had said, hoping he could reconcile their conflicting reports. Instead, he plied me with questions about their findings that I could not answer.

After he left, I fled the room, gasping for breath, to tearfully summon Doug's parents from Florida and call his brother in New Jersey. When I returned to the ICU, his nurse told me somewhat indignantly that she'd been trying to find me, as there were more doctors to see. Oh, boy!

Finally, a specialist in infectious diseases appeared. He seemed sympathetic to my bewilderment, so I begged for an explanation: was Doug holding his own or dying? This doctor, bless him, took the time to explain that each of the doctors I'd seen had given an assessment only of the particular organ system he specialized in, not of Doug's overall condition. So although his heart was doing reasonably well, his lungs and kidneys were failing and he was definitely in danger of dying.

I hold no grudge against the hospital that treated my husband, and I encountered a number of compassionate nurses and doctors during Doug's hospital stay. As far as I know, they did everything in their power to help him, and I am grateful for that. But it seems that it's no one's job to ensure that the family has a clear picture of what is happening. If specialists are uncomfortable discussing anything outside their area of expertise—perhaps because of a fear of lawsuits or because they haven't had time to familiarize themselves with the facts—then the hospital needs to designate someone to fill in the information gaps. I had to do this myself by gleaning tips from sympathetic doctors and nurses, and learning how to decipher medical jargon.

Deep into the Information Age, why is this still a do-it-yourself process?
I certainly can empathize with the author's frustration. In today's environment of "ccommitteeomittee" the idea of the "big picture" can be lost. All of the specialists only feel comfortable discussing their particular areas of practice. Not only do the physicians do a poor job of communicating with the family, but as her conversation with the nephrologist indicates, the inter-physician conversation is lacking as well. The job of "filling in the information gaps" could be filled by the patient's primary care physician. They could, in theory, serve to "filter" the information from all of the specialists, but even they may not be able to answer all of the questions involved. They could also serve to facilitate communication between the physicians as well.
Ms. Payne asks: But do they understand that when your loved one is in the hospital, the rest of your life doesn't just go away?
Some do, some don't. If the family spokesperson wishes to speak with me and they are not around at visiting time, I will call them. I have never had my office staff serve as a wall to block a patient's family from speaking to me.
The problem, as always, is time.
While Ms. Payne has only her husband to worry about these physicians my have several critically ill patients to see. This is in addition to the other hospitalized patients and their office. There is simply not enough time to have a sit down with families when they are available.
The nurse as a source of information about the plan gets the short shrift, IMHO. The nurses at my hospital serve as an excellent conduit from the physician to the family and I will provide the nurse with my plan during rounds. Certainly family famliy wishes to speak to me I will make the effort to do so, but since the nurse (hopefully) knows everyone's impressions and plans, these could be passed onto the family.
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