Zero-Way Communications

Like a blogbuddy, or two, I’m returning to my regularly scheduled life after an emotionally-straining hiatus, one which was sprung on me suddenly and unpleasantly. I’m reticent to disclose a great many details as they inherently involve a medical condition of a close relative, someone who has not given consent to publication of the same.  But as followers of the blog may well have inferred anyway, events were very precarious for a time. Nor are we out of the woods yet — we’re in a clearing, so to speak, with much more distance yet to trek.

One thing that I will share about the experience was that the patient wound up incommunicado — in need of a ventilator tube which precluded speaking, and in need of hand restraints to prevent the instinctual response of taking the tube out. This would have resulted in death. So although it seems a little bit cruel, I can’t disagree with the decision to restrain my relative’s hands. But the result was that where the patient could not communicate with the medical caregivers — no speech, little room to nod or shake the head, no ability to write or use hand gestures.

Bizarrely, though, the patient’s inability to communicate with caregivers produced a mirrored result — for several days; the patient functionally no medical caregiver attempted to communicate with the patient. I don’t think I was just expressing anxiety about my relative’s precarious medical condition when I say that finding this state of affairs upon my arrival was unacceptable.

The patient is intelligent, well-educated about medicine (at least for a layperson), and not unusually emotionally fragile. But for the better part of 24 hours, the patient did not know what medical condition was even suspected, nor why all of this restricting equipment was used. And no one would look the patient in the eye and talk, explain, or even smile.

Imagine, if you will, the terror of suddenly waking up to find yourself with a tube stuck down your throat, your hands restrained, surrounded by beeping equipment and people treating you like a lab specimen. Unable to speak or otherwise vocalize, unable to even wave your hands in a meaningful way, and without any understanding of how you got there or when it would end.

You might despair. And you certainly would be frustrated and probably a little bit scared, too. Even if you were intelligent, well-educated about medicine (for a layperson), and not unusually emotionally fragile. These are extraordinary emotional stressors. This, in turn, just might affect your body’s ability to heal and mend from the medical problem that got you there in the first place.

Those of us who got to be with the patient during the (appropriately) sharply restricted visiting hours, our initial communication was accomplished with yes-no questions and hand squeezes; later we were able to offer a pen and paper for written questions. The treating doctors discharged their communication duties by extremely brief telephone calls (under two hundred seconds in length) to the family made after their rounds. These doctors were nowhere to be seen during the visiting hours; in fact, to this day I have never laid eyes upon either of the two primary treating physicians.

Thus, it fell to relatives coming during the very restricted visiting hours to explain to this partially-sedated patient what had happened, how the patient had wound up there, what the diagnosis was, and why the tube and hand restraints were there. This was information that should have come from the doctors, not us.

Confronting the medical staff about this situation predictably elicited denials and defensiveness, and an initial consultation with the hospital’s patient advocate produced only middling results in the form of pleasant chatter from the nurses. There was no meaningful commitment to do better in the future, only a desire to deny wrongdoing or neglect in the past.

By the time I arrived on the scene, the lack of communication from the medical staff was causing as much anxiety as the medical condition itself, for patient and family alike. Along with other family members, I participated in a second meeting with the patient advocate, this time in the hospital’s administration offices, next door to the offices of some big mucky-mucks with names high on the letterhead. Another person made an impassioned plea that my ill relative was mentally alert and sufficiently intelligent to understand a description of what was going on. That’s when I said something very much like this:

Now, I’m used to reviewing reports that include a recital of objective and subjective symptoms, listing diagnoses in order of probability, setting forth a treatment plan, and describing a prognosis. I don’t personally need to see that document for my [relative]’s case, I just need to know it exists, because there are doctors with multiple specializations involved, so everyone knows what the consolidated pathway to wellness is, and someone who wears a white lab coat can explain what the mileposts on that pathway are to my [relative] so there can be some hope, and understanding of how progress is being defined.

Note that I never used words like “lawyer,” “attorney,” “lawsuit,” or “malpractice.” I was quite careful not to. But about halfway through my statement, the patient advocate’s face registered clearly that he had heard the words I had labored not to pronounce. The guy was good; after only a moment’s eye-widening, he reverted to his serious, sympathetic, and concerned expression, and used “active listening” techniques. I’ve taken that class too, so I recognized what he was doing, and was pleased.

Note also that I offered not one word of criticism of any of the clinical care being dispensed, or of the medical decisions being made by anyone. The truth is, I am not a doctor, and I am in no position to offer such criticism until and unless I educate myself sufficiently to make such a challenge. But the patient advocate, understanding part of his role as a deflector of clinical challenges, understood that I was in a position where I could educate myself should I desire to do so.

And within the hour, during visiting hours, we had a visit from a hospitalist who explained the diagnosis and planned treatment with timetable, and explained why the treatment plan needed more information before it could be completed. This doctor actually looked my relative in the eye as he explained all of this, which was the first time such a communication had been made by someone who could claim the postnominative initials “M.D.”

I’ve no doubt that my involvement in the process carried some heavy weight towards making that happen. My relative is fortunate in that I was around, and able to fluidly construct a long, complex sentence describing a medical-legal report and why, if a bad result occurred, a bunch of contemporaneously-written records would be compared to that report by lots of people with the postnominative initials “J.D.,” a prospect which I knew full well fills medical personnel with an unreasonable level of dread.

The thing of it is, you shouldn’t have to get a lawyer involved in the process and implying threats of litigation to be treated with dignity in a hospital. Not everyone has a lawyer in the family. But everyone deserves to be treated with dignity.

We got that dignity directed to our relative. Subsequent communication from the treating physicians was appreciably better, if not entirely to our liking — but more importantly, there was communication aimed in person at the patient, and not just at the family over the phone. I wonder, though, whether other patients and their families had to take similar sorts of steps before they got what should have been offered freely as an inherent part of dispensing good clinical care.

Things are a little better now, although my relative is not yet home and there will be significant and risky events in the near future, a prospect that leaves me more than a little bit ill at ease. But the whole thing leaves me with a psychological musing, and a professional introspection.

I can also readily imagine that a doctor needs a level of professional detachment from the patient, particularly patients who wind up needing critical care and whose very lives hang in the balance. If the worst happens to my relative, I would be devastated. But a doctor is going to lose some of her patients, and must still always have the ability and confidence to continue practicing, for the sake of the other patients who can make it to a good result. So, a doctor needs enough emotional distance between those deaths (or less dramatic but still undesirable outcomes) and the ability to carry on. I get that.

And I don’t imagine for a second that there is a single doctor out there who doesn’t care whether her patients make it or not. I imagine that every doctor, everywhere, in every speciality, wants every patient to have the best possible outcome in all cases. Well, there might be a sadist somewhere, I suppose, but medical doctor is the very quintessence of the “helping professional.”

I also wonder how much the inability for communciation to move in one direction served as a deterrent to communication moving in the other. Is it possible that the doctor stood there over the patient, saw that the patient was completely unable to communicate, and therefore concluded that the patient was uninterested in communication?

The information the doctor has to dispense is complicated. The doctor does not have enough time to educate every patient about every practice, technique, problem, and other facet of the treatment is occuring, to a level that would satisfy a medical board examiner. She has to make rounds, prescribe treatments, and document what she’s been doing and why. She’s busy. And, let’s face it, most people don’t have much of a capacity to understand the medical jargon anyway. How many people understand the difference between congestive heart failure and a heart attack? Or an aneurysm and a stroke? And if they aren’t going to understand it anyway, then perhaps it isn’t worth the doctor’s time to explain it.

Only it is worth it to explain, and most people can be educated enough to get it, if you use the right langauge. You don’t even have to talk down to them — you just have to use phrases that are commonly understood instead of jargon and technical language.

And I get that people become doctors for a whole lot of reasons. And different people have different appetites for confrontation and potential hostility. I can understand someone who is smart and wants to help other people and doesn’t at all mind the idea of a career providing a comfortable living pursuing a career in medicine — and I can imagine that such a person might prefer to minimize confrontration because it is emotionally uncomfortable and while the doctor is on an intellectual pedestal, the moral and emotional pressures are very small-d democratic.

If one has a need for control, it seems one would try to become a surgeon. An internist, it seems to me, should have a personality type that derives pleasure from empathy, from helping others. (As opposed to a litigator, who armchair psychology says is the sort of person that derives pleasure from victory.) Besides, damn it, communicating with your patient is part of a doctor’s job. And the doctor is always going to be doing that job from a position of authority and superior knowledge, so it’s never going to be a confrontation between equals; the doctor always has an advantage.

And then I turn that criticism to myself. I’m surely guilty of not communicating with my own clients at the level I wanted done in this case. I, too, operate in a complex environment and my communications with my clients is not one between equals. There are some differences, of course; but all the hallmarks of professional services are still there, including heavy amounts of jargon, complexity of circumstances, reliance upon extensive training and experience, and inherent uncertainty of outcome. How many times have my clients been frustrated with me, the way I was frustrated with these doctors? I’ve no way to know.

For now, though, it’s enough of an emotional challenge to stay focused on actually getting my work done, since the upcoming procedures are still generating a lot of anxiety for me and the rest of the family. But I do take a lesson that like these doctors, I need to ensure that my communication with my own clients must be meaningful and effective as well. I don’t have a “client advocate” hanging around to tell me when I’ve done a bad job communicating with my clients, the way the doctors at this hospital have a patient advocate who seems like he’s bugging them all the time but is really doing them a huge favor. I’ve got to do that job myself.

Maybe a silver lining to this deeply unpleasant experience is that I’ll be a better lawyer for having gone through it.