It's Obvious

It seems obvious that the way to achieve better health outcomes is to solve problems patients actually have, rather than try to make patients have the problems we best know how to solve. Yet so often the obvious is overlooked, and then we wonder why patients don't improve or are "noncompliant."

"Rose" is 89 years old. She has diabetes, heart disease, chronic back pain, and wounds on her feet. One foot has an open ulcer that just won't heal; a toe was amputated from the other foot, and now not only is the surgical site not healing well, but the adjacent toes are showing signs of breakdown. The foot with an ulcer is hooked up to a machine 24 hours a day; this gently sucks drainage from the wound bed and into an attached canister and stimulates growth of new tissue. Rose carries the machine around in a shoulder bag, being careful not to trip over the tubing attaching the machine to her foot. She also requires two canes to walk, one in each hand. So while she isn't getting much worse but certainly isn't getting much better either, every time Rose wants a drink of water or needs to use the bathroom or seeks a sweater to ward off a chill or anything else, day or night, she must hoist the bag-with-machine onto her shoulder, grab one cane with each hand, carefully adjust the tubing so she neither trips nor pulls it loose, and slowly grunt her way through the little apartment she shares with her husband. Many times I have sat in the living room waiting for Rose to make her way to and from the bathroom, listening to her rhythmic grunt. grunt. grunt., one grunt for each step, because her back hurts when she moves, and she is carrying a machine, avoiding long tubing, and leaning on first one cane and then the other as she goes. A trip to and from the bathroom is grueling exercise for her.

Rose needs to see her vascular surgeon, and I need her to see him, because our treatment no longer is working and we need to adjust the plan. More robust but equally elderly, Rose's husband is confident he can get her down the stairs, into the car, and to the big university medical center where her doctors practice, but he's worried about what will happen once there. In the past they have waited up to forty minutes for a transporter to bring Rose a wheelchair, but now Rose barely can stand for four minutes, much less forty. In the past after appointments they have had equally long waits for a transporter to rescue them again and wheel Rose back to the parking garage. Unless they can get a wheelchair, Rose's husband explains, she can't go to the doctor.

The medical center is full of wheelchairs. I know this. I've been there many times; I've seen them. But I also know Rose's husband is sharp and a straight-shooter not given to exaggeration or fabrication. So I called the social worker whose job is "transitional care," that is, helping people span the gap between the hospital and home, seeing that they have the resources they need to manage safely and well when they are discharged from the hospital, and that they are properly "connected" to doctors and other providers for their follow up care.

The social worker didn't know, she told me, what the situation with wheelchairs was, but she would look into it. With Medicare now exacting significant financial penalties when patients are re-admitted to the hospital for problems that could have been prevented, there is particular emphasis on being sure follow up appointments are kept and that post-hospital care goes smoothly.

A short while later the social worker called me back, startled to have learned that there were only five (5!) wheelchairs and transporters assigned to cover that entire area of the medical center. Patients indeed often had to wait some time for a wheelchair to be available. And, yes, this could have a significant impact on follow up "failures," i.e., patients missing appointments because it was too difficult to get to their doctors' offices when they were tired, hurting, sick. . . and most in need of being there. If they waited until they were sick enough to need to be taken by ambulance to the Emergency Department transportation would be assured: EMS will deliver patients directly to the treatment area, and there are plenty of wheelchairs in the ED to take patients to their hospital beds, yes indeed, more follow up failures turned into re-hospitalizations.

The social worker had seen that a concern about wheelchair availability had been duly registered and was making its way upward through the administrative hierarchy. Meanwhile we remember that Rose is 89 years old. The chances of her living long enough to see administrative resolution of this issue are somewhere between the proverbial slim and none.

So there we were, the social worker and I, on the phone together talking about an elderly patient who needed to see her doctor and who could get to the medical center, but once there could not get to the doctor's office. The social worker wanted to help. Under a special program, Rose qualifies for Medi-car transportation from home to the medical center; the social worker could arrange for the Medi-car. I reminded her that Rose and her husband have a car and can drive themselves. The issue was getting her to the doctor's office once there. The social worker could contact the doctor's office and make an appointment for Rose, she said, and even try to make an appointment with the endocrinologist for the same day. Rose and her husband can dial a phone, I noted; they didn't need help making appointments. They needed help getting from one part of the massive medical center to another. The social worker would see what she could do and get back to me.

Later that day she called with her ultimate resolution: An appointment had been made with the vascular surgeon, and a second appointment a month later with both doctors on the same day. I reminded her again that the problem was transportation from the parking garage to the doctor's office, and she told me curtly that there were only five transporters available and people would have to be patient and wait.

Rose's problem was transportation within the medical center; the medical center's solution was transportation outside the medical center and assistance making appointments that Rose was physically unable to keep. Unable to solve the problem Rose actually had, the social worker provided "help" that wasn't needed, or helpful. But although solutions to problems Rose didn't have and not solutions to her actual problem, this "help" was something the social worker knew how to do. And so that's what she did.

And I'm afraid this happens often.

I could retire comfortably tomorrow if I had a dollar for every time I've been asked to see patients because they were "noncompliant" with their medication regimens and needed "teaching." Information and instruction are proper responses to lack of knowledge or misunderstanding. But patients don't take their medications correctly for a host of reasons, most of which have little to do with knowledge.

They may not be able to afford medications, or medications may have unpleasant side effects, real or imagined. Patients may object to the very idea of taking medicine, or may believe they have too many medicines to take. They may simply forget. The prospect of taking medications may leave some patients feeling "old" or "sick" when they prefer to think of themselves as healthy and vibrant. They may hide medications from their families in order to keep their health issues secret and then miss doses because family members are present and would ask questions, or because in effect they have hidden the medicines from themselves, too. Regimens may be too complicated, or interfere with other activities. People may worry about appearing to be "junkies." They may fear needles or not be able to remove protective covers or child-proof bottle caps. Small pills may be too difficult for arthritic fingers to handle, or may be invisible to eyes with fading vision. Patients may believe their medications don't work, or that doctors prescribe them only so patients will have to keep going back for refills, generating more billable office visits for the doctors. They may understand that while taking some medications they need to give up other things they enjoy, ranging from drinking grapefruit juice to driving, and decide that they'd rather "drink and drive" than take pills. Patients may feel too sick to go to the pharmacy to have prescriptions filled. Large pills may be hard to swallow, liquids may have an unpleasant taste, tablets that need to be broken in half may resolutely refuse to break.

And yes, sometimes, people truly don't understand what they should take, when, why, how, and what the consequences should and could be. This latter group is the one needing "teaching." Yet time and time again I see a nurse or other provider explaining medication names, actions, purposes, administration, and possible side effects, and then considering the job done, and calling patients "noncompliant" and the task of teaching them not do-able when patients continue not to take their medications as ordered. The fact is that such teaching is easy; we know the information and can spew it in our sleep, and then we can feel justified that we have done our work and it is the patient who has failed to take proper advantage of our largesse.

In fact, we have taken the easy road, assuming patients all have the problem that we are best prepared to solve, "knowledge deficit," rather than asking, probing, listening, and comprehensively assessing to ascertain what the real issues are in any individual situation, and then figuring out with the patient how best to address them and move forward. I remember a time when patients were expected to follow "doctor's orders" blindly and were not taught; since then it seems we have come to suppose that imparting information is the solution to all problems with health behaviors. But there's not one of us who never fails to act in accord with what we know to be best: We overeat and underexercise,we sleep too much or too little, we smoke or tan or text while driving, . . . and not for want of "teaching." Providing information is what we healthcare providers know how to do; solving the messy problems of complex human lives is a dicier undertaking. So we assume that anyone who doesn't do what we want him or her to do needs to be taught, less because we have identified real learning needs, and more because teaching is something we know we can provide.

I am working to get Rose her own little wheelchair that can be folded and placed in the car; she and her husband aren't yet sure they want one, but it would make her much less a prisoner in that little apartment, and I have a hunch we'll come to an accord. Failing that, perhaps the vascular surgeon will agree to see her in the medical center's parking garage, if only to call attention dramatically to a simple problem that could be resolved expeditiously if the right people were motivated to do so. And if all else fails I can offer Rose the services of a physician who makes house calls and would evaluate her at home.

Yet through all of this, and in so many similar instances, I am struck by the amount of time, energy, money, and frustration expended by so many providers when by assumption and action, deliberately or not, they try to fit patients into the molds of problems they know how to solve (as by teaching, ordering Medi-cars, and making appointments, whether or not patients need those things) rather than identifying and solving the problems patients actually have. And when patients don't respond by changing their behavior and/or getting better the costs are great, the outcomes poor, and everyone dissatisfied and wondering why. But although challenging, it's no mystery. In fact,

It's Obvious.