By Michael Miller DO, FACOS, FAPWCA
“Then if you got it, you don’t want it - seems to be the rule of thumb. Don’t be tricked by what you see, you got two ways to go.” Devo – Freedom of Choice
Expertise comes in many fashions. I know that when I want Mexican food, I go to a Mexican restaurant, preferably one that is run by native Mexicans. After all, who should know Mexican food better? The same goes for Greek, Indian, and Italian food. When I needed new suits, I sought out a store that not only had my size, but had salespeople who knew how to fit a suit, and how to make those personal adjustments that make the suits mine. One size never fits all, so real expertise comes in taking the general and making it specific.
There are two sides to every story, and of course, two parts (at the very minimum) to any physician/patient relationship. It is not merely enough to be a competent health care provider, but rather it is a partnership between ourselves as captains of the ship and our patients acting as both the ship’s owners and passengers. We offer destinations and how best to get there, and they select the itinerary.
The clothing store tailor tells me that the current look is with cuffs on the pants, and that he thinks they will enhance how the suit looks. I then have the choice to accept his recommendation or not. The waiter in the Greek restaurant offers me hummus as his recommendation for an appetizer. I can choose this, or go with the Saganaki, flaming in all its glory with Ouzo and lemon (OPA!).
Ice cream comes in an almost infinite number of flavors. We have all watched someone agonize over their choice of Cherry Garcia, Superman, or Chunky Monkey, as they taste a little of each before deciding on…Vanilla. Are there too many flavors of ice cream? Maybe offering only two or three might reduce the stress of which flavor best suits the cone you chose.
Why should we expect health care to be any different? I will not belabor Obamacare, wherein the government may ultimately ration care by offering those with high number of diseases (and equal number of decades lived) the opportunity to vacation terminally on an ice floe (Death Panel seems like such a macabre term). For at least the foreseeable future, the status quo is that everyone will have the access to needed care if they so desire.
The problem is this: the meeting point of patient choice and care offered is clouded with issues like appropriateness, cost-effectiveness, availablity, and of course - the issue that is the ultimate deciding feature of success or failure - patient compliance.
For me, one of the major frustrations in practicing medicine besides hospital bureaucracy, excessive paperwork, poor compensation, governmental mandates, the threatened 20+ % pay cut in January…(maybe I’ll just stop there) is patient compliance. Just like shoppers who can either demonstrate their sales resistance or exercise their buying power, patients all too often plunge headlong in one direction or the other, with no rationale for their choice. Like you all, I offer my patients several options, sort of a Chinese take-out menu. While some are more preferable than others (in my professional opinion), the common feature is that they are all appropriate and acceptable. It’s like offering them the choice of driving either a Rolls Royce or a Smart Car, with someone else paying for the gas. The goal is to get to the final destination: namely, the desired outcome.
Yes, we sometimes offer far too many options to juxtapose and consider. However, all the patient needs to do is ask intelligent questions, listen to our responses, and then allow us to help them decide which suit to buy and whether cuffs are the right look. Unfortunately, the response to our well-intentioned offerings is often not one of the beneficial ones - or even the unoffered and unrealistic choice that they read about in some smarmy, opinionated blog.
Cases in point:
At the urgent request of a concerned HHC nurse, I made a house call to a patient who had recurrent episodes of cellulitis. After multiple courses of antibiotics and the wound care center’s daily Kerlix and Coban to the mid calf with no improvement (as Gomer Pyle would say “Surprise, Surprise, Surprise”), she and her agency had enough. To my evaluation, this pleasant, black female had the reddest legs I have ever seen in a person of color. They were warm with mild edema, and I was truly concerned about her condition. She moved in a slow, unsteady manner and her debility was quite evident. I advised her that more aggressive treatment and further diagnostics were needed, and that I did not think she would get better at home.
After contacting the LTAC liaison to evaluate her for what I felt mandated immediate admission, the patient told me that her son was coming to visit that weekend (it was a Friday). She begged to be admitted on Monday. I pleaded my case, but reluctantly called the liaison back to rearrange for a Monday evaluation. The patient was told to get to the ER if her legs got any worse, as she would probably be admitted. She agreed, and after discussing the case with the referring HHC nurse, we left for the next house call. You can imagine my dismay when the liaison called me Monday to tell me the patient had changed her evaluation to Tuesday because she wanted to sleep in later on Monday, and then wanted to clean her house.
The penultimate problem was that, in expectation for the Friday admission, home health care had not seen her for three days, and without current vital signs and labs that were to have been obtained, the potential Tuesday admission was denied. Nevermind that the Physical Therapist went to the house Wednesday and reported the legs were now blistered and redder. Having had the LTAC admission denied, I contacted the HHC nurse and started treatment…at home. Two days later, the patient finally made her decision. She showed up at the ER at the acute care hospital (the LTAC is in the same structure) demanding to be admitted, and told them that I had promised her. When told that she did not meet criteria, she called the LTAC administrator threatening to call Medicare if she was not admitted. She never did believe that it was not only Medicare, but also her poor choices that kept her out of the hospital, at least for now.
I saw a 35 year-old T6 paraplegic male of 17 years at home. He had been going to the local wound care center for two years, with little to no improvement (yes, I often ask why I make house calls when many of the patients have transportation but let’s save that for another blog). His wife worked, so he was the primary caregiver for 3 children. When I found him smoking in his wheelchair with his bed clothing in tatters, he professed a sincere desire to get better. Uncovered bilateral ischial, a coccygeal, and a sacral wound, all with exposed bone at the base, told us both more than we wanted to know. He had felt weak for a while, and was running low temps for the last three weeks. With the diagnoses of osteomyelitis, early sepsis, and presumed malnutrition, I discussed urgent admission to the hospital. He fought hard against this due to his desire to care for his children. Ultimately (after boosted by his wife on the phone, who was told of the severity of his condition and wounds), he agreed to go to the hospital but not without multiple mandates and requests.
He arrived on Thursday and a barrage of X-rays, MRI, labs, and consultations with plastic surgery were ordered. Upon finding out that the plastics consult would not be for several days, he demanded to go home. We convinced him to stay based neither on his severe malnutrition, nor his need to be in bed and turned, nor that his assessment was still incomplete. The winning point was that it was easier to get the plastic consult inpatient than to do so at their office, and that he would still have to leave home to get it. Despite his recognition that he had failed home care in truly spectacular fashion, his wife still had to admonish him daily to stay in the hospital, where his children were able to visit after school. He acknowledged his continued “bad behavior” at home, when he knew he had to be in bed and that he had not taken good care of himself. He seemed to realize that if he was to be healthy enough to care for his children, he first needed to care for himself. He admitted that being left alone at home with his poor choices had allowed him to exacerbate his problems.
The phrase “No good deed goes unpunished” incessantly blared in my brain as every day of the next week started with an impassioned cry from him on my cell phone to “let me out of here.” The primary hospital internist graciously spent considerable time each day assuring the patient knew the plan of action and supporting the need for ongoing hospitalization. When we finally had the plastic consult done and aggressive debridement surgery scheduled, we had to resume negotiations for him to stay after (he wanted to leave immediately after surgery on Friday evening or Saturday morning). Advised of the problems that could occur on a short-staffed weekend if he went home and had any problems, he reluctantly agreed to stay until Sunday (I know, not much better) to allow 48 hours post op to elapse. He left with all four wounds ready to improve and his acknowledged understanding and agreement (aha, a good choice) to minimize time in any one position, turn side to side, work with the dietician, stop smoking, be compliant with dressing changes, and stay out of his wheelchair unless there was an ABSOLUTE, UNQUESTIONABLE, LIFE-THREATENING EMERGENCY.
Two weeks later, his nurses reported in a snarky tone that the wounds had worsened. The ischial wounds bore the brunt of his “choices” with dark, dry edges, bruising, and friction injuries to all edges. They chronicled a litany of disrupted dressings, broken canisters, and periods of uncovered wounds after the patient removed what he felt were leaky dressings (we could never convince him that a silent pump meant it had achieved the desired pressure). He seemed to delight in checking the pumps diagnostics by turning it on and off.
I called the patient, only to receive a text in response that his phone could only text and not call. He admitted, in textual conversations worthy of Homers’ Illiad, to all manner of poor choices, including spending hours up in his chair. To my surprise he did not bristle, but was in agreement when told (actually typed) that if he did not improve in the next week, that I would have to admit him to a long-term facility to assure better compliance, since he obviously could not do so at home. Despite sore fingers, but feeling smug and convinced that logic, a caring textual persona, and the patients obvious desire to make better choices showed his firm grasp of the obvious, I awaited what I knew would be good news in the coming days. A week later, I received a text from him that he was going back to the other wound care center and that my services were “no longer required.” My colleagues at the hospital received this news with the excitement generated only when eating a bowl of Cream of Wheat. The last information we received was that the patient was not even well enough to start back at square one.
The questions that arise are obvious. What standards are there to identify poor care due to the actions of the patients? Can, and should we, punish someone who knowingly causes themselves to become more ill? Do we continue to provide patient controlled, unsuccessful care, or should we deny care because of noncompliance? At what point does Freedom of Choice become noncompliance, and how much noncompliance is too much? At what point in the care spectrum does society have the right to say that a person who has chosen to be consistently noncompliant with recommended therapy no longer gets therapy? Home Health Care agency guidelines based on outcomes might be part of the answer, but is this applicable for doctors, hospitals, and insurance companies? Outcomes are dependent on many things. Does failure of one part mandate termination of the others?
Most importantly, what should happen when patients exercise their right to be the decision makers to their own detriment? At some point, there has to be a decision made, whereby poor choices that result in no appreciable improvement (or decline) are no longer rewarded by offering more opportunities for noncompliance. In this horrific economic climate, how much money wasted is too much?
As health care providers, we strive to offer our patients the same level of care that we would want for ourselves and our loved ones. Ultimately, the future may present the answer in the form of panels that review the ongoing care, and then decide whether or not it should continue, stop completely, or change in intensity. Clearly noncompliance wastes money, time, and valuable resources. For every patient that stays within the recommended guidelines for treatment, another chooses their right to be obstinate. As the 1980’s rock group DEVO refrained in their song Freedom of Choice, “Freedom of choice is what you got, Freedom from choice is what you need.” And I’ll take a double dip of Rocky Road, no, make that Raspberry Ripple. Until next time…
About The Author
Michael Miller DO, FACOS, FAPWCA is the Founder and Medical Director of The Wound Healing Centers of Indiana and IndyLymphedema, as well as a clinical consultant, teacher, inventor, and published author.
The views and opinions expressed in this blog are solely those of the author, and do not represent the views of WoundSource, Kestrel Health Information, Inc., its affiliates, or subsidiary companies.
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