This essay is co-written with my wife Veronica Pollack. We are her brother Vincent’s guardians. It’s mainly intended to close out my previous post, which concerned Vincent’s hospitalization last week.
This was his second hospitalization in two weeks. As I described before, he was hospitalized for a badly-infected right big toe. This may sound trivial; it isn’t.
The toe infection had been ongoing for eighteen months. A podiatrist, an internist, an orthopedic surgeon, an infectious disease specialist, and a dermatologist all set to work on this toe problem. None really understood why this toe steadfastly failed to heal. Vincent has been placed on repeated temporary courses of antibiotics with varying success. Many imaging studies were performed to rule out osteomyelitis.
Vincent’s internist eventually became alarmed at the sight of his swollen and draining toe. Because he had failed oral therapies, it was time for IV antibiotics. So Vincent was going to the hospital. He requires a knowledgeable helper and advocate to communicate his complex medical history. Veronica was trained as a pediatric clinical nurse specialist. So she accompanies him on such inpatient experiences….
The immediate goals of this hospitalization were to rule out osteomyelitis and to begin IV antibiotic treatment. The long-term goal was to uncover the basis of the infection and prevent recurrence. Every tool of modern medicine was put to use except one – the telephone, which might have been used to coordinate the team’s efforts.
Vincent’s good humor and kindness tend to bring out the best in people. Most hospital staff we encountered were skilled and respectful, doing their best to care for him. Even so, the hospitalization experience easily becomes frustrating for everyone. Kind but harried people can become abrupt and defensive when confronted with a situation that doesn’t nicely fit their standard scenarios, especially while caring for an intellectually disabled person.
Vincent walks uneasily when he is healthy. With a swollen and painful toe, a slippery floor and an IV pole, he needed help walking to the bathroom. Vincent’s routine was for Veronica to help him there – once he was able to walk – brush his teeth, shave him and change him into a fresh gown and underclothes.
Veronica was happy to help, but she sometimes needed help keeping him steady and protecting his IV line. She would call the nurse when problems arose. Sometimes there was a long wait for help. Once, help never came. Vincent became increasingly agitated and began to repeatedly whack Veronica on her arms. She tried to keep him steady, but he struggled. Repeated requests, then shouts for help went unanswered. He ended up propped on a commode with a messy and broken IV, embarrassed and humiliated.
In many community hospitals, physicians are only available to patients and nursing staff by telephone, except when these physicians make rounds. When a doctor comes to the inpatient unit to see her patients, she decides whether to communicate her observations and plans to the nurses who actually spend the most time with patients and their families. Many physicians round at times when families are away from the bedside.
This is particularly difficult for Vincent, who cannot readily communicate regarding his care. We worked hard to be present. We asked to read any notes left in the chart so that we could participate in decisions regarding Vincent’s care. The chart note is the method by which collaborating services—internal medicine, podiatry and infectious disease– share information and develop plans. Never once were any of these professionals in the same place at one time or even on the telephone with one another. This process proved especially problematic once the podiatrist determined that the best shot at a final resolution would be optimal wound care to promote complete healing.
He needed to be seen by staff with real expertise in this area. We had been working unsuccessfully on this issue for months. An order for the wound team was written into Vincent’s chart. This was discharge day. Vincent’s toe was again recognizable, draining only small amounts of clear fluid. Discharge was supposed to occur after evaluation by the wound care nursing team. Vincent was otherwise cleared to go home.
Hours went by with no word. The team had actually come by, but had apparently misinterpreted the intention of the order. Upon looking at Vincent’s chart, they determined that they would not see him and wrote a note to this effect. They never examined Vincent. They never spoke with Veronica. They apparently never called the doctor who requested their services.
This note was written by the wound care staff around noon. Vincent and Veronica waited two-and-a-half more hours without word. Finally, Veronica went to the desk to request the nurse. The nurse walked in thirty minutes later, complaining of how overwhelmed she felt. She explained that she knew they weren’t coming. She just seemed to be waiting until she got around to Vincent’s discharge. All the waiting had been for naught.
At this point, Veronica became quite angry—at the lack of communication between staff, at the nurse’s inability to understand the importance of this consultation to resolving an eighteen month problem, and at the lack of respect she and Vincent received. The nurse was in the midst of signing off her patients for the next shift when she announced another delay. Veronica tried to clarify some issues in the discharge plan. As she spoke, the nurses simply turned their backs, continued their conversation between themselves, and walked out.
Vincent’s eventual discharge plan was really no different from previous plans that have repeatedly failed before. For the moment, his foot and leg look good. He has a new oral antibiotic. He’ll probably be seen weekly by a podiatrist until the wound heals. Maybe this aggressive follow-up will prove helpful.
We could have done some things better. We might have been more aggressive calling his physicians in their offices during the day. We might have obtained permission to come earlier or to stay later to cross paths with supervising physicians.
Veronica spent eleven hours a day at the bedside: waiting around, giving care and support over two hospitalizations neglecting other family and life activities. It was pretty grueling. Hospital staff’s passivity and lack of communication, and the hours of needless waiting, proved infuriating.
For the first few days, we believed we were recruiting knowledgeable allies who could help us address nagging problems. For more than a year, Veronica and Vincent had been driving to doctors’ offices, waiting for doctors, speaking with doctors, all with little result. We believed we would finally get useful help. Things didn’t turn out as we hoped. We’ll try to avoid that hospital, where we have now had two difficult experiences. But we may need it again. It’s the closest to Vincent’s home. This frustrating hospitalization wasn’t the biggest deal. It was just one of those disappointing stop along our caregiving journey.
We struggle to relate personal stories such as ours to public policy. There’s much policy conversation about the need for improved care coordination, empowering primary care providers or others to assume this role more effectively. As a friend emails, family caregivers effectively are left to assume this role. Veronica spends much of her everyday life trying to do this for Vincent. Compared with many other family caregivers, she has many resources to assist in Vincent’s care. Our healthcare system is not set up to make this effort successful. In many ways, there is no system at all.