Albeit with less evidence, home healthcare protocols have arisen from these same data. While physicians continue to determine which drugs patients are to take and how their medical management unfolds, home healthcare providers have tended to look at the medical protocols and on that basis determine what teaching and interventions patients should receive at home. A particularly common practice is "frontloading" home visits, with nurses and therapists visiting patients frequently early in their home healthcare tenure, and tapering off over time as patients, theoretically, progress clinically and become more independent in managing their own daily care. Likewise, standardized teaching tools have been developed, with the expectation that patients will march through them and emerge informed and inspired to make positive changes and move towards better health. Sounds good . . . and sorta seems obvious, doesn't it?
Except it doesn't work.
Protocols and paradigms manage diseases. But home healthcare providers manage people. Or, more accurately, help people better manage themselves. And people are complex, inconsistent creatures with rich, multifaceted lives wherein health is but one priority and circumstances are in flux. Complexity, inconsistency, and flux coupled with the general messiness simply of being human and having a plate full of competing and often conflicting needs and demands just don't fit into paradigms and protocols very well. The best treatment plan in the world won't work if it isn't carried out, and it won't be carried out if it doesn't fit reasonably well into the real lives that real people actually live.
So as we look at the patients who are not progressing and who cycle through hospitals for frequent tune-ups only to go home and return again a short while later with the same problems or worse, instead of hammering them with the protocols perhaps we should trouble to discern who they are as people and what is needed for them to be and do better.
Consider "Miriam," who at almost eighty-five years old has heart failure, severe kidney disease, diabetes, an irregular heartbeat, vascular disease, arthritis, chronic lung disease, high blood pressure, and more. Hers is without doubt the most complicated medication regimen I ever have seen in a home setting, with one pill to be taken an hour before any others and before eating, many more to be taken with food at various times during the day, others at bedtime, some "as needed," one with a varying dosage on different days of the week and another with different doses of the same drug to be taken at different times of day, one where the dosage changes frequently based on blood test results, "water pills" to be taken far enough apart that they don't overtax her precariously functioning kidneys but not so late in the day that she must be up frequently at night, insulin injections four times daily, inhaled medicines administered with three different types of devices at various times during the day, and a medicine that is applied topically to her skin. Miriam monitors her weight daily, her blood sugar multiple times a day, her blood pressure, her oxygen saturation level, and, when necessary, her temperature. She manages oxygen equipment and a machine that helps her breathe at night. She walks with a walker, showers on a chair, and carries a bucket back and forth between the toilet and the commode at her bedside so as not always to need to dash to the bathroom when nature calls in the middle of the night. And she does all of this well, very well. There is nothing more of it to be "taught," nothing in the standardized tools that she hasn't seen many, many times before, and nothing that seeing my face frequently, because some protocol says I should show up, would accomplish. Yet her condition is unarguably precarious.
What threatens to do her in? Her wonderful, huge, loving family, that perhaps is the envy of all who know them!
One of ten siblings herself, Miriam has several brothers and sisters still alive, as well as a proliferation of generations of nieces and nephews. She reared her own children and now has a slew of grandchildren and great-grandchildren. Most have spouses and assorted relatives by marriage. And as they have for over fifty years, they all turn up in various combinations at Miriam's apartment not only for every holiday, but also every weekend and from time to time at points in between. And Miriam loves it. When there are weddings, funerals, showers, graduations, birthdays and anniversaries, and other special events Miriam wants to attend if she possibly can, and with a family that large it seems that something special always is on the calendar.
Miriam does not make mistakes with her medications, or falter with her self-monitoring, or deviate from her strict cardiac, diabetic diet as she goes about her daily life. But when the family is around, despite all her careful planning, their good intentions, and my reminders and coaching, problems happen.
There was the night of a brother's special birthday, with the family gathering to celebrate. Another of Miriam's brothers was to pick her up, and knowing he becomes impatient any time he needs to wait Miriam carefully had made her way downstairs to wait for him on the bench on her front porch. It was rush hour, the weather was inclement, and one of the major league ball clubs was in town and playing not far from Miriam's home, all making her brother very late. He grumbled as they slowly made their way through traffic to the Golden Chef restaurant some ten miles away, only to discover that the event was at the Golden Chef banquet hall, not the restaurant, requiring yet another drive. By the time they arrived Miriam was very hungry and realized her blood sugar was dropping low, as she had eaten lightly at lunch in anticipation of the evening but still had taken her insulin, and now dinner was late. So when she finally was seated she reached for whatever was available: The bread basket, and an assortment of olives. "They're small," she thought of the latter.
Both bread and olives are loaded with salt, which causes fluid retention and overtaxes a heart in chronic failure, and the bread also provided a burst of carbohydrates that drove Miriam's blood sugar way up, and then crashing down.
When I arrived the next morning Miriam was in trouble, barely able to move, short of breath, full of retained fluid, and exhausted. But that I arrived the next morning was because I ignored the "protocol" and heeded the risk factor that I knew a family gathering represented. I took a blood sample to check Miriam's kidney function so we would know how much her "water pills" could be adjusted safely, together we figured out how to manipulate her insulin and food intake to re-establish control of her diabetes, and a hospital stay and downward spiral were avoided. Indeed, Miriam has been my patient for three years, and despite severe comorbidities she has been hospitalized only for an occasional, rare adjustment in medications that proved unsuccessful and an infection that could not have been predicted.
This is not because I am prescient or a clinical genius, but rather because I know that protocols manage diseases, not people, and that, outside such settings as an ICU, severity of illness does not necessarily correlate with need for services. Instead, while implementing the medical protocol that a patient's doctor has put in place, home healthcare for chronic disease management is best driven by a model where it is intensity of need rather than degree of sickness that drives services.
Intensity of need may be affected by medical instability, of course, but also by changes in habits (such as that much delayed birthday dinner), an error in a patient's self care, a change or absence of caregivers, a worsening of another condition that had been stable, or an adjustment of medications. With Miriam, I know that even when she is doing well enough that I can visit infrequently, that visit should be on Monday, because her family will have been there on Sunday, and if someone brought a birthday cake or ordered pizza or a grandchild proudly made the (salt-laden) dinner or any of a million other things, for all her careful planning and good intentions Miriam will be swept up in the moment and try to "be careful" and "have just a little" . . . and be in trouble.
There is no standard, evidence-based protocol or paradigm that says to visit Miriam, or someone like her, on Mondays, but I know to do it because I know Miriam. This wasn't hard to figure out, but for wider success with chronic disease management we need not to disregard evidence-based protocols but rather to incorporate and go beyond them, assessing, evaluating, and knowing our patients in ways that standardized tools and procedures never allow, whether we are nurses, doctors, therapists, or others.
With apologies to those who have been waiting, I note parenthetically that thanks to my fractured arm and consequent limited ability to use a computer for some time the "Intensity Clusters" model for managing chronic diseases has been delayed but will be coming and available online. But meanwhile, whether therapists are progressing with patients from basic safety, positioning, and relaxation measures to stretching, gait training, and restorative yoga, to progressive exercise and endurance, moving backwards on the cluster continuum when patients have problems and forward as they improve; or nurses move from managing patients' care to sharing that management with the patients and then to transitioning it to the patients with the nurses providing only occasional oversight and trouble-shooting, also moving back through the clusters when patients have problems and forward again as they progress, a patient-centered focus where the individual patient is the primary focus and the standard medical protocol is a tool rather than a goal is possible, clinically optimal, and highly cost-effective.
And a note to patients:
If something doesn't make sense, if you know something is likely to be hard for you, if there's a work schedule or personal commitment to be accommodated, if you've been told and tried and failed, if there's a habit that trips you up every time you try to change, if your body's clock doesn't run according to conventional hours, if you hate vegetables or can't swallow pills, or you're aware of anything else likely to impact your progress, or lack of same, tell us! Chances are good that if we're doing our jobs well we'll figure it out eventually, but you can save us all time and trouble and fast-forward your trip to better health if you partner with us actively and help us know you and know what your life is like. Instead of smiling, nodding, saying, "Yes, I understand. I'll do that/try/do my best" when you know perfectly well that for reasons unknown to us your best efforts are likely to be less than successful, say so. We can't do a good job of focusing on you and effectively building your regimen into your real life if we don't know who you are and, as they say, how you roll. Speak up; we don't bite (most of us, anyway). At almost eighty-five years old Miriam is astoundingly competent managing an extremely complex regimen of medications, equipment, self-monitoring, and diet; because she has an occasional downfall at a family gathering is a cue for me to tweak my practice with her, not a cue for me to beat her up for being less than perfect. I've yet to meet a perfect patient, or a perfect provider, but I've also yet to meet a flawed one who couldn't be and do better based on standing in his or her own truth.
Really, as people live longer and the health problems that confront and confound them increasingly are chronic conditions that need to be managed within the context of their circumstances, values, and abilities rather than strictly according to science and textbooks, isn't it clear what the focus of services, on both sides of the exam table, needs to be . . .
Paradigms, Protocols, or People?
No comments:
Post a Comment