We do that which we should not,and do not that which we should…St.Augustine on sin
I was reluctant twenty years ago to try the first medication I was prescribed for MS and I stopped after a couple of weeks because i didn’t like the side effects. I put off using a
recommended cane, delayed moving to a walker, and didn’t consider a wheelchair until a nurse predicted an earlier death if I avoided one. These are small examples of the all important issue of compliance. Of what use are treatments unless we use them?
The misguided refusal of some parents for their children to receive vaccinations for smallpox in eighteenth century England, for measles in twenty first century America due to fear of autism, and polio in Afghanistan due to its implication in war against Islam, are examples of non compliance based upon fear.
Continued smoking or drinking after a diagnosis of tissue damage, not following through on dietary instructions for diabetic or heart conditions, not drinking enough water with a history of urinary tract infections are common examples of non compliance based upon perhaps denial or a wish to assert one’s autonomy against the social, medical, or parental “should” (that’s a particular favorite of mine). Denial is particularly damaging and selfish, because like many suicides it affects family and friends, not simply oneself.You have me on that last one.
The water drinking is a particular problem for me. For years, with MS, I had problems of urinary incontinence and urgency. So I trained myself to minimize water intake before going out, limiting carbonated beverages, a lot of the things I’d read astronauts do while awaiting take off.
Once I began self catheterizing ten or fifteen years ago I no longer needed to limit water. In fact, the opposite was quite necessary. I’ve had a very difficult time training myself out of the old habit I’d spent years building. There’s still a small voice that warns me against drinking too much water and calculating time for bathroom breaks. This week a friend told me he’d read that using a straw rather than gulping increases the amount we drink. Got straw. So far, so good. Who knew? I’m not asking why.
In addition, our diagnosis of chronic illness or disability usually marks the beginning of a lifetime of great uncertainty. To not comply gives some of us a sense of control. At least, to this treatment, prescription, or recommendation, as my body changes and it is so often in the hands of others, to this I can say no.
And there is our attachment to self and body images of ourselves. For a long time I put off using a walker because I didn’t want to be an old guy shuffling around with yellow tennis balls attached to my device. Somehow I completely ignored my actual body holding myself up with a can’t on weakened legs. I actually looked like an upside down L.
And there is our great deluder, false pride. Holding onto an image of myself that certainly couldn’t be that weak or ill that I required this or that sort of help. In fact, I could easily say that at least 4 of the deadly sins– pride, gluttony, wrath and sloth– play a role in our refusal to do or continuing what is, or is not, in our best interest. And I’m sure we could make a case for the others– greed, lust, envy–, as well.
Let me add, of course, that what is recommended is sound and we have done our due diligence whether our experience with a trusted physician over the years, or second opinions, or other trustworthy sources. Our willingness to follow up, or comply, with the treatment recommendations of medical professionals is highly variable. The likelihood that those of us for whom treatment does not offer immediate relief from pain or distress, and whose illness is not directly life- threatening, will go along with suggested regimens is actually quite low. If medication is prescribed and its cost and side effects are minimal, the chances of its continued use are much better than if expense or discomfort are present.
I know from my experience and hearing others speak that exercise or physical therapy are unlikely to be pursued if financial strain, transportation, child care, or other logistical barriers exist. My illness does not exist in a social vacuum. Whether we are afflicted by illness or acting as caregivers, have multiple roles, and their role related to sickness is one among many.
For most people, the social, time, financial, energy, and other costs of pursuing recovery or delaying progression are weighed against their probable occurrence. A short-term/high cost of compliance is different from a long-term one, just as a low probability of benefit over the short term does not necessarily predict benefit over the long term.
We and our families also often think differently about medical situations involving an elderly person or a child. The confidence we have in our medical providers is important as well. What is considered costly or beneficial also depends on available resources and cultural, family, and personal values.
Again I know that much noncompliance is an oppositional expression of my wish to be consulted and heard or needing time to get used to the idea of a procedure or intervention. And how often do physicians or therapists check in to see whether their recommendations are being followed or to see if help is needed to adhere to a regimen or to ask about any remaining or unsatisfied doubts about an agreed-upon course of action?
There is no decision-making technology that can make choices for people. Respect for the rights and autonomy of patients does not mean silence on the part of the professional. We and our families deserve and have the right to be challenged. It is in dialogue and conversation that meanings and values emerge, are shaped, and reshaped. We do not want to be patronized. Besides studies, probabilities, and chances, we want to know what the professional thinks and feels and we need to assert our wishes or confusion, as well.