Monday, September 29, 2008

Thoughts on Being a Patient

As we kept logs on the medical staff we encountered in our adventure, we also thought about what we brought to each interaction.

It can be overwhelming to be caught up in a large medical system, especially when you’re either frightened or don’t feel good, or both. These systems operate on their own rhythms and for their own purposes. Maintaining some sense of ourselves and some feeling of control (illusory or not) was what led us to our counting exercise, for example.

At the same time, we tried to see how this looked from the other end of the telescope. All the people we were seeing were working, and their work has them dealing with large numbers of people, not just us. Even more, they don’t just deal with a constant flow of people in their jobs, they deal with many people in extremis, not all of whom are, or are capable of, being very nice about it. We clearly had selfish motives in thinking about our conduct, beyond our own family standards for behavior and good manners. We wanted the best from the professionals we encountered, we wanted their attention and we wanted to be treated with respect and as individuals.

One of the basic rules of the kind of professional “soft skills” (negotiation, communication, leadership, ethics) I teach is to work on cultivating curiosity. The best way to become a better negotiator, for example, is to ask more questions—and to listen genuinely to the answers, processing them through your brain, not just waiting through the other person’s noise until you get to talk again.

Our logging, in addition to giving us some sense of control, then, was also a way for us to help ourselves focus on what the other person in each interaction was doing, and how. It provided a structured reminder to be curious about each person with whom we interacted—even when we didn’t feel like it, which we didn’t, always. The discipline helped us bring curiosity to each interaction: it made us more observant and other-focused, and helped us see each person as an individual, not as a cog in the system acting upon us. (This was helpful, because it did feel that way sometimes and it would not have been hard to get into a wrangle with one or two of the folks we’d encountered, if we hadn’t been exercising some self-control and awareness of what was going on.)

Our efforts probably made us more interesting, and we hope, more pleasant. Both common sense and social psychology will tell you that likeability matters (it is much easier and more appealing to do something for someone who is being pleasant to you than someone who is berating, insulting or rude) in all kinds of interactions. When we could bring a sense of interest in the professional approach of the staff working with us, and find something either to ask about or comment upon, we were helping to shape how the encounter went. Given the sheer numbers of people passing through the work lives of these professionals, this seems like not only a good, self-protective idea, but maybe also our obligation as part of a two-way human interaction.

Some of this is just common courtesy, but I think it goes beyond that. We were often able to change the direction of an interaction in a more positive way by paying attention to what the other person was doing, noticing something about it and asking questions. This often helped to slow the pace and make the interaction more purposeful, thoughtful and engaged. I’m guessing this made the interactions better on both sides. Being purposeful about what we were doing helped us more than just giving us the sense of control. Maybe it was even an obligation—one we had not really contemplated—on us as participants in the process. I don’t want to get carried away putting obligations on sick people. Still. I know people whose research deals with patient advocacy training and related issues, and I think I’ll be paying attention to that in a whole new way as I recover from this experience. If finding a way to feel some control at a helpless time can improve the process for all, maybe this is something I need to think about more seriously than I have in the past.

We learned some interesting things along the way. In the aggregate, we found a workforce that was committed to their work and seemed reasonably content in it. We found a system that was working on growing its own, with staff being supported in going to school to get to a higher level of certification. We heard spontaneous stories about how, when the regular systems (for example, 12-hour shifts for nurses) didn’t work with family life, other schedules were provided. We encountered staff engaged in serious problem-solving and clearly felt it was within their mandate to do so and to advocate for patients.

Bear in mind that we had some significant advantages in being able to take this approach, especially at the beginning (well, ok, not in the emergency room that first day) when we were fully functioning and not experiencing immediate symptoms other than needing to schedule brain surgery.

Yesterday’s post stimulated a wave of thoughtful, wise and interesting comments. I’m still thinking about some of the points raised and will be responding personally and here after a little more processing. For example, Doug wrote yesterday “I believe that feeling in control is a healthy state to be in, and aids in quick recovery… Taking control of that which you can control is healthy and aids healing. The sweet spot is the limit of what you can, actually, control. Taking control of that which you can control is healthy and aids healing. Trying to control that which you can't hurts health. (I believe there should be something about "and it annoys the pig," shouldn't there?)” … If you can control it, go for it. If you can’t, then go sit in the sun.” Seems right to us.

Otherwise, yesterday was another down-ish day. None of us felt very good all day and I’m still working on internalizing a tortoise-approach and level of energy when it’s very “not me.” We started getting not-bills from our health insurance this weekend, with lots of numbers. We are most interested in how the bills will look. In the early 1980s, we couldn’t make heads nor tails of Dorothy’s hospital bills (heart problems) and ended up hiring a medical bill auditor to help. Similarly, some of Ernie’s hospital bills (55 days worth) might as well have been written in Urdu, for all that we could make out of them. The numbers were staggering, though since he’d been a federal employee, the share we paid out of his estate—of the DISCOUNTED figures, because he had health insurance, go figure—was miniscule. It appears to us that I’m very close to my maximum co-pay simply from the emergency room visit and the radiology. We haven’t even seen the neurosurgery, intensive care, or other hospital stay bills. Stay tuned.

We all continue to be most grateful for the connections and the time you take to stay in contact. I’m off to physical therapy this morning.

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