a challenging patient

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a challenging patient
Justin Cook
Family Practice Paper
12/20/99

Michael S.

-a challenging patient-

Mr. Michael S. is a gentleman with whom I visited several times during my tour at the South Tabor Clinic. Reams have been written about this man (at least in his medical chart); he has a variety of complex medical issues, and he poses a significant challenge to any provider who dares intersect his path to care. In what follows I shall augment the paper catastrophe that synopsizes Mr. Stahley¹s medical history. (Please forgive the flippant tone here; it is employed to help inform of the mild duress my preceptor has suffered at the hands of this care-rendering imbroglio. I also employ this tone to have some fun.)

Briefly, Michael is a 34 year-old male believed to have Fragile X syndrome (IQ ³around thirty or forty² according to my preceptor), recalcitrant urinary incontinence, recently diagnosed type-II diabetes mellitus, stage I hypertension, a history of ³pedophilic tendencies,² and obsessive-compulsive disorder. He lives in a group home whose caregivers/caretakers monitor him 24 hours a day. Mr. S. has seen my preceptor for several years, and they have a good relationship. The myriad issues surrounding his care touch upon each of the (five) cardinal aspects of care that we have discussed in class. I have been impressed by how much effort has been invested in this man¹s care; I am also impressed at how much his story has made me think about these principles. Enough blathering; on to business.

Access One could write a chapter solely on Michael¹s issues regarding access to care. For starters, Michael is generally non-communicative (at least in the traditional sense); he nods yes/no to questions during our visits (his answers are often incorrect) but apparently uses ten or more words when alone with his caregivers (or rarely with my preceptor). I¹m a big fan of parenthesizing (as you can see).

Given Michael¹s impaired communication skills, I often wonder how he expresses concerns, feelings of discomfort, or pain, all of which have the potential to profoundly influence how he accesses care. As a result, Michael¹s reason-for-coming is often dictated by a particular caregiver¹s impression of Michael¹s condition; it is these observations of caretakers that are most often the reason-for-coming rather than a concern that Michael has personally voiced (I am not sure if Michael is indeed capable of voicing such concerns). These reasons-for-coming become ARC¹s (my clumsy abbreviation for actual reasons-for-coming) as they evolve during the course of the interview (more on this below). To confound matters further, two of his caregivers, in isolated visits, have mentioned that Michael has ³a high tolerance for pain;² subsequently the caregivers as a group have a ³low threshold for taking him in² to the clinic should they observe any concerning changes in Michael¹s behavior or actions. (I have been unable to clarify just what they meant by this increased pain tolerance or how they came to appreciate it.)

In spite of his caregivers having such a ³low threshold,² Michael¹s more recent visits have yielded reasons-for-coming ranging from ³he just doesn¹t seem to be as active as usual² (diagnosis: glucose of 550 upon first diagnosis of diabetes) to ³he is coughing more than usual² (diagnosis: a raging lobar pneumonia). Certainly the above reasons-for-coming voiced by his caretakers seem to underestimate the objective medical findings and assessments (perhaps this is what they mean by his ³high tolerance²[!]). Indeed, Michael¹s relative inability to communicate, ³low threshold² not withstanding, surely makes him vulnerable to having delayed access to care if not serving as an obstacle to his desired access entirely. I feel that this is unfortunately the case even as we and his caretakers are very attentive and are generally concerned for Michael¹s interests.

For the visits with which I was involved, however, Michael¹s reason for coming and ARC was essentially for follow-up on his transition from undiagnosed diabetes to instituting dietary and exercise improvements, drug therapy, and diabetic education (in weekly or biweekly visits). In these visits, Michael¹s ARC¹s were effectively defined by my preceptor; Michael was instructed to come in ³for diabetes follow-up² whether or not there was an intercurrent issue that needed to be addressed at that time. I felt that this assured Michael of better access to care, especially since careful listening would guarantee that other issues would be addressed during that visit (therefore circumventing the caretakers in their role as the barometers of Michael¹s well-being). (I would be remiss if I did not mention that these visits were absolutely necessary; his diabetes was severely out-of-control [more on this later]).

Unfortunately, this type of physician-mandated ARC is not appropriate for long periods of time and is incredibly demanding of money and resources. These visits were, however, enabled us to confront and begin management of his troublesome urinary incontinence (this issue began to take center stage as the diabetes follow-up visits progressed--more on this in when I address the contextual aspects of his care).

Lastly, Michael faces one additional access-to-care barrier: his insurance will not be accepted at the South Tabor Clinic after December 1999. Michael¹s Regence OHP plan is reimbursing in $24/unit increments (down from $44) beginning in January 2000, and this reimbursement is not nearly enough to cover the costs of patient visits. Apparently, South Tabor¹s ³break-even² point is just a few dollars south of Medicare¹s paltry $35/unit reimbursement. Michael has been notified, along with all other South Tabor patients who are covered by Regence OHP, of this problem. (On the sly, one option is for Michael to apply to Providence OHP, which reimburses providers at a rate that is more financially feasible.) Last I heard, Michael¹s caregivers were looking into getting Michael on the Providence OHP plan.

Continuity I have seen Michael in the clinic on three occasions, and he has been accompanied by a different caretaker each time. Another time, I saw Michael from afar in the clinic while I was working with another patient and was unable to visit with him; Michael was with another (a fourth) caretaker at this visit. During my visits with Michael, I perceived that different caregivers had varying levels of interest in his care and varying degrees of knowledge concerning him, his habits, and his medical history. Evidently, the home in which Michael lives has over a dozen caretakers and a high rate of turnover. This problem is at the foundation of Michael¹s issues with continuity of care.

Michael¹s personality plays into this issue of continuity. I have discovered that it takes a lot of patience and time for Michael to become comfortable with a new caregiver in his home; it also takes multiple visits for Michael to become comfortable with a new provider, as I learned over the course of our visits (later visits were certainly more enjoyable that the first). Given the turnover rate in the home and the possibility that Michael may have to switch to a new provider if he cannot join Providence OHP, he is at risk for even greater barriers to communication, having disastrous consequences for the continuity of his care.

The importance of continuity of care among his caretakers was made clear during my first visit with Michael. Just prior to this visit, Michael had been given a glucose meter and several of his caretakers were taught how to measure his thrice-daily blood glucoses. His glucose control at this time was miserable, and his diet was poorly controlled. Unfortunately, the weekend staff at Michael¹s home was poorly informed and did not know how to operate the meter; no values were measured from Friday afternoon until Monday morning. This weekend disaster happened again as I learned at the next week¹s visit, but this time Michael¹s ³caregiver-du-jour² happened to be the home¹s manager (who seemed extremely conscientious) and assured me that he would personally train the weekend staff for the coming weekend (which he did). Indeed, having multiple, incompletely informed caretakers has made it difficult for Michael to receive the care we strove to give him.

Given the infrequency of Michael¹s emergent visits and the complexity of his care (motivating Dr. Janzen, my preceptor, to make efforts to see Michael personally every time he came to the clinic), Michael has a surprisingly high modified continuity index (MCI); this is in spite of the frequency of his visits, which would make it statistically more likely for him to see another provider in the clinic. I qualitatively estimated his MCI from reviewing his chart, which showed surprisingly very few notes by providers other than my preceptor. Perhaps Michael¹s high MCI can be attributed to the tendency of these other providers to avoid Michael and his hefty chart like the plague. Just kidding. It is surely a factor of Dr. Janzen¹s nearly zealous commitment to Michael, which I will delve into in more detail below.

Patient-provider continuity certainly fosters the development of a relationship between physician and patient. But I found that as I became more intimate with Michael and his history, I began to feel more unsettled regarding my relationship with him. Surely the development of this relationship must be founded upon trust, empathy, and so on; however, I began to realize that I personally had difficulty divorcing the issue of his chart-noted ³pedophilic tendencies² from Michael the patient. I chose to not pursue what Michael may have done in the past as an alleged sex offender because I did not want this issue to adversely affect my perception of him (which would, in some manifestation, likely affect the way we interacted and therefore the care I rendered). I elected to not discuss this issue with my preceptor because I sensed that he was not of the same opinion; he is wholly dedicated to his patients with a certain selfless, humanitarian fervor. I know that Michael¹s ostensibly opprobrious past would have no bearing on the way he perceives him as his patient, and I feel reasonably confident about my impression of my preceptor as it concerns this issue. Perhaps I¹ll loose sleep over this issue sometime and call Dr. Janzen to get some advice. In any case, there is no question that one¹s personal feelings towards someone can color the relationship between you and that person, regardless of the nature of the relationship; it was my decision to remain ignorant of these aspects of Michael¹s past in spite of whatever disadvantages it may have conferred in sacrificing my depth of knowledge of Michael¹s history. This was a call that I felt was appropriate given the ephemeral nature of our relationship, but it is nevertheless an incredibly delicate issue.

Michael¹s longitudinal, chronological continuity of care is peppered by every-other-monthly visits to Dr. Green¹s (a psychiatrist) office; Dr. Green manages Michael¹s OCD and sexual ³outbursts,² and does so because Dr. Janzen knows that Michael has a relationship with Dr. Green that has been therapeutic despite whatever feelings that Dr. Janzen may have regarding his own (Dr. Janzen¹s) ability to treat Michael¹s psychiatric conditions. It is my impression that even if a good relationship were not in place that Michael¹s psychiatric issues may be beyond the scope of Dr. Janzen¹s purview (I should qualify this by saying that I have not formally discussed this with Dr. Janzen). This issue is a felicitous lead-in to discuss a philosophical issue concerning comprehensiveness of care.

Comprehensiveness As an aside, what does one give up when one refers a patient out to a specialist for a condition or treatment that may almost be within reach of that FP physician¹s capability to tackle? I heard a physician in the South Tabor Clinic argue that in resigning to referring such patients, one is ³selling oneself short,² surrendering the pursuit of new knowledge and skill. The counter argument, of course, is that doing so forces one to work outside of one¹s comfort zone which can be stressful and perhaps cause harm (this argument was espoused by another clinician). This debate will certainly wage onward as FP continues to advance in the face of increasing medical microspecialization. My feeling is that each encounter with such a borderline procedure, need, treatment, or whatever must be engaged individually; I intend to push my limits indefinitely in terms of my learning, but I know that I have some difficulty with uncertainty and with spreading myself too thin. Yawn, you say; a chicken-shit answer par excellence. But after having discussed this with Dr. Janzen, it seems that my impression is reasonably typical of FP physicians, himself included. I cannot really know much more about how I will address this issue until I encounter it myself in practice (in whatever discipline that may be). Incidentally, my current approach as a medical student, whereby I attack every new procedure like a seething, caged animal (indeed, there is a different expectation for medical students), obviously cannot apply to the above conditions.

The above discussion of comprehensiveness of care did not address Michael¹s situation specifically. More on this below.

Coordination As mentioned earlier, the less-than-satisfactory communication among Michael¹s caretakers resulted in two consecutive weekends during which his glucose readings were not measured. This type of problem is at the foundation of his issues with inadequate coordination of care. During my second visit with Michael, it was our goal to organize a time during which all of Michael¹s primary caretakers would be available so that the diabetic educator (a Family Nurse Practitioner at the clinic) could visit and help them with dietary, exercise, and glucose-measurement instruction. The organization of this meeting became somewhat of a logistical nightmare, and I am still not clear if his diabetes education has occurred yet. (The quagmire that attends most steps in this poor man¹s medical care is impressive.) In any case, the effective completion of Michael¹s diabetic education is absolutely essential, and I anticipate that a group meeting with several satellite meetings (to train, for example, the weekend staff) may occur this week.

As another aside, the system for managing diabetes chronic care in the South Tabor clinic is not terribly evolved; it consists of a red diabetes sticker on the inside page of a patient¹s chart. In other words, there is no standardized charting or patient-notification system and providers see to the maintenance of their patients by checking the nitty-gritty of each chart with each patient visit (e.g. by looking at the lab results in the patient¹s chart to find out when the last HbA1c was performed). This seems to work with surprisingly few hitches as each provider is truly conscientious about addressing preventive care with each visit. (Honestly, it works!) In fact, it served to keep me on my toes as far as asking as many preventive and chronic-illness-maintenance questions as I could summon with every visit (a surreptitiously effective learning tool). I am sure that they will move to a more evolved system of patient notification when they move to a new computer system after theirs crashes in eleven days. Actually, I have no reason to believe that they are not Y2K compliant.

Contextual Here we come to some bread and butter issues with Mr. S. It was often a challenge during Michael¹s visits to ascertain exactly what the appropriate context should be when considering his case. As described above, his caretakers often were the source of his actual reason for coming. However, certain aspects of Michael¹s condition may have been more troublesome to Michael¹s caretakers may therefore have been given more attention as a reason-for-coming; let me explain:

Michael¹s enuresis and incontinence problems had been getting progressively worse for many weeks, and it was this secondary reason-for-coming (or perhaps ARC) that was a major concern of his caretakers for many of his ³diabetes follow-up² visits. I suspect that his incontinence is likely to be particularly bothersome to his caretakers (as opposed to say, his high blood pressure or hyperglycemia) because the caregivers are themselves burdened (the ³clean-up² factor) when these episodes occur. Additionally, the fact that Michael smells like urine much of the time reflects may reflect poorly upon the care he is given, at least as people visiting the home (such as Michael¹s family--about whom I know nothing, incidentally) may perceive things; I sensed some frustration in more than one of Michael¹s caretakers when this issue was addressed. Although Michael¹s incontinence is likely to be troublesome to him, it may not be any more so than his general malaise from having blood sugars in the low-500¹s. Luckily, improving the management of his personal chief complaint (e.g. hyperglycemia) may effect positive changes for his caretakers¹ chief complaint (e.g. incontinence). Our management focused on better diabetes care, the addition of amitriptyline, and an exploration of the sentiments of Michael¹s caretakers regarding this problem (indeed very troubling for them) -- which made us place still more emphasis on ameliorating his incontinence.

Although this may be a stretch, Michael¹s incontinence may be an issue for Michael¹s extended family (fellow housemates) as well; I did not think of this during any of our visits, but I would be curious to explore this if I were to work with him again. I can only imagine that the stress that cleaning-up Michael puts on the staff combined with Michael¹s general malodorous state is likely to strain relationships between Michael and the other the residents of the home. Additionally, the increased demands now placed on the caretakers concerning Michael¹s food preparation and monitoring of eating habits (Michael formerly had free reign over whatever he wanted to eat for two out of three meals per day) are also likely to strain relationships among the parties involved. I explored the latter issue with every visit, and thankfully the caretakers appeared to be handling in stride the rigors of his diabetes care and were eager to see Michael¹s condition improve at any cost.

Overall, I perceive the context of Michael¹s incontinence as follows: The biomedical model dictates this is an issue of fulminating urinary incontinence in a male, likely exacerbated by uncontrolled, recently-diagnosed diabetes. The biopsychosocial model says he likely has a psychiatric disorder or impairment that additionally prevents him from controlling his bladder appropriately; Michael has a complex psychiatric history, and this is very reasonable. The family or social model says that whatever the diagnosis, the major concern is that he is sitting around with soiled pants twenty-four/seven, and this affects his relationship with caretakers, fellow housemates, and potentially reflects the adequacy of care given to him at the home as perceived by outsiders.

Summary Indeed, Michael S. is a patient whose needs demand a comprehensive, attentive approach that stresses the value of good listening and observation to elicit the most important issues surrounding his care. I was fortunate to have interacted with him for the few visits we shared, and he has left me with many thoughts on which to chew. I hope for his sake that he is able to continue his relationship with Dr. Janzen and enjoy improvements in his health and quality of life. And thank you for enduring my punchiness.