Tapping the wisdom of patients and family members is now recognized as valuable, both in setting care goals and attaining expected outcomes. The Joint Commission includes fostering patient and family participation on the care team among the 2009 National Patient Safety Goals (NPSG), a series of relatively prescriptive practices that target problem-prone points in care. Places where we know care frequently derails and harm occurs. This year, NPSG #13 includes:
Identify the ways in which the patient and his or her family can report concerns about safety and encourage them to do so.Bringing attention to worrisome changes in the condition of a loved one is something I know about. But when I did this, I didn't think of my actions as anything sanctioned, anything valuable. And certainly not as strategies deliberately undertaken to prevent harm. On the occasions when I bypassed the chain of command in 1992, it's safe to say that no one else on the care team thought so either.
People who cared for my son were good to him. In fact, their interventions made his life possible. But they did not like being on the same team with me, his mother. The bitch.
My second child was born with a significant esophageal problem, one that led him to spend about half of the first year of life at our local children's hospital. When Luke wasn't hospitalized, he often received home nursing care for a portion of each day, first to help with problems directly related to pre-surgical care and feeding and later, to help manage a secondary, but transient, developmental problem with his trachea. My husband, an anesthetist, and I provided home care when the nurses weren't on duty.
If Luke's first year was a journey, the problems with his esophagus made me feel as if we were toting an infant around the world on a gravel road. But Luke's acute respiratory events were sudden stops, times when the road abruptly disappeared and we were suspended, gasping for our own breath, as we applied a tiny face mask and forced pressurized oxygen into his trachea, hoping the intervention would be sufficient to reopen his collapsed trachea and allow us to journey on. We knew the common triggers that led Luke's trachea to collapse, and equally important, we recognized the signs he exhibited immediately preceding these episodes.
I wish I could say that using a G-tube to feed him and keeping a portable oxygen tank close at hand were the most significant stressors we faced. But by the end of the first year, Luke's problem list also included post-operative complications that led to separation of the newly repaired esophagus, an event heralded by both the unwelcome sight of breastmilk draining from a chest tube and the unmasked despair that crossed the surgeon's face as he stood cribside in the ICU. Months later, a failed Nissen fundoplication, complicated by a 6" x 1" wound dehiscence. And eight weeks after that a repeat fundoplication, again accompanied by a wound dehiscence that rivaled the first. Several admissions for presumed sepsis, and so many outpatient esophageal dilations that I stopped notifying anyone that we were going to the hospital and began treating the early morning procedures like scheduled maintenance on an unreliable vehicle.
I mention these things because I think they informed who I was, how I was seen, what I became.
This image, taken in the early days of Luke's life, is the result of a camera malfunction. The film didn't advance correctly, and the roll produced images superimposed upon on another, one blurring into another. This is what the world felt like throughout much of that first year. Nothing turning out as expected. Getting any focus at all often meant piecing together disconnected images, and even then, the meaning was unclear.
I could share my rapid response "success" stories, none of which were predicated on anything more special than the wisdom that came from knowing and caring for my son and a history of communicating with a knowledgeable professional when Luke's situation exceeded my ability to figure it out. At home, if I had a concern I couldn't resolve, I telephoned the attending surgeon. I didn't do this often, but when I did, I received a return call, one that brought either reassurance or a change in the plan of care.
But when my son and I were in an inpatient mode, I was expected to negotiate a highly complicated hierarchy, one that required me to convince a bevy of intermediaries--nurses, interns, residents, differentiated from one another by months of experience--that my observations offered something of value. That something I said should be heard, evaluated, and perhaps, acted upon. It didn't take me long to figure out, in the era before widespread use of cell phones, that "9" was the number that got me an outside line.
Calling an answering service and speaking with an on-call surgeon is materially no different when one is a mother caring for a child at home or the family member of an inpatient in a children's hospital. But the operational response is some different. I think I activated a rapid response only three times, once to ask that the on-call surgeon contact the hospital because my husband was bagging our son with a portable oxygen tank pulled from the Code Cart, an action that became necessary when repeated requests to have one brought to his bedside, in light of the warning signs we had observed, failed.
I think it's important--especially for parents whose concerns were not heard, whose children did die--to know how hard it was to push back, to effect an appropriate response from a system so wholly unsuited to accept input from anyone outside of the rigid hierarchy. My husband and I were both seasoned healthcare professionals. We had knowledge, skills, and the language to describe our concerns. And still, our child almost died.
My son has grown. And so have I. The young woman who probably said, "Paul is standing here bagging the baby because not one of these idiots know what in the hell they're doing," now advocates for system level changes. Changes that will help everyone on duty be able to do what each likely entered a healing profession to be able to do: No harm.