Entries Tagged as 'Experiential'
January 18th, 2009 · Comments Off
Coming across two blogs relating especially poignant and insightful personal experiences with medication compliance defeated my plan to abstain from posting while I develop a new project (more about that at a later date).
My repeated criticisms of contentions made about treatment adherence without evidence notwithstanding, I’ve long held the belief, based on my interpretation of my own clinical experience (at best, a particularly shaky n=1), that (1) healthcare practitioners who have an empathic understanding of their patients’ struggles with compliance can better assist those individuals in that effort than the equally competent but unempathic colleagues and (2) one way of gaining and deepening such empathy is through reading personal account by patients – like these.
Patient Compliance Overlaps Parent-Child Compliance
Bending, not Breaking at Chez Perky describes a special subcategory of medication adherence, a child’s resistance to medication. This excerpt evokes the sense of the mother’s dilemma and indicates how much energy, thought, and time she has invested before calling the pediatrician for help:
Getting him to take his medication has always been a struggle, as you may remember. That’s why the Daytrana Patch was such a lifesaver. But it had too many downsides for his profile to be the optimal answer. It didn’t work as well for him as the Focalin does. But getting him to take a medicine orally is next to impossible. We have two good weeks, and then two weeks of hell, then two good weeks, then two weeks of pure hell, and so on. We are currently in hell, and I’m not sure it’s only going to last two weeks.
His latest trick is that he won’t open his mouth to take the medicine, but even once he does, he gets the medicine (which was mixed into mango sorbet – don’t ask… he has a discriminating palate) in his mouth and then won’t swallow it. He stands there and cries and refuses to swallow for what seems like forever, but is really somewhere between 5 and 15 minutes, and then either spits it out or forces himself to throw up (no, I’m not exaggerating). Occasionally he’ll swallow it under threat of not getting potato chips in his lunchbox, but that threat doesn’t hold a lot of weight anymore.
From Mandated To Self-Motivated Treatment Adherence
Two posts, Why I Take My Medicine and Recovery: What Helped Me to Recover from Schizophrenia, at Overcoming Schizophrenia focus on compliance. The latter examines the importance of legally mandated treatment (often known as “Assisted Outpatient Treatment” or “outpatient commitment”) in the writer’s case while the first entry describes the catastrophic consequences of the writer’s past nonadherence and the rationale the writer has found most useful in maintaining compliance. This excerpt summarizes that reasoning:
Medication compliance is a life-long routine because there is no cure schizophrenia, however, there is treatment. If I stop taking the medication I have an increased risk for a relapse, another psychotic break, and symptoms will return. My chances of a relapse increase each day I do not take my medication; so far I have accidentally skipped two days total over a span of one year on Abilify. I take pride in the responsibility I carry out every day of my life.
Each of these posts is worthwhile reading for clinicians who want to understand and help their patients in the realm of medication compliance and for patients and the family and friends of patients involved in those struggles.
Tags: Enforced Treatment · Experiential
September 17th, 2007 · Comments Off
Compliance Status Report
The most recent status report of my personal compliance case, adhering to a rehabilitation program following my July 27th hip-pinning, was Contemporary Compliance Case Study Follow-up
This past week, I made my way to an appointment with my orthopedic surgeon in follow-up to my July 27th hip-pinning, all the while nurturing hopes that I would forthwith be exchanging my walker for a cane – a switch which would signal a quantum leap along the path to full ambulation and, more to the point, represent a dramatic improvement for me in the area of fashion accessories.
Well, it turns out that forthwith falls especially late this year. One can imagine my disappointment when the surgeon opted for conservative management, decreeing that the much desired transition from walker to cane would not take place for at least another month.
In hopes of accelerating my progress, I will begin Physical Therapy next week with the attenuated incentive that, should all go well, my right leg will be able to handle “touch-down weight bearing” shortly thereafter. Regrettably, anticipation of that milestone does not set my heart aflutter.
For now, however, I have been – emphatically and repeatedly – instructed to continue to avoid using my right hip to bear any weight. While I am a tad dejected by the medical mandate, this turn of events has at least led me to extend my repertoire of walker-assisted activities beyond Walkernastics.
Because dance has always held a certain appeal, I explored the possibilities in this discipline, but the obvious choices – the tango, clogging, and the polka – proved unworkable because of the restriction against weight-bearing on my right leg. And, while it is hardly surprising to learn that something called “The Two-Step” includes movements beyond the capacity of the walking (on one leg) wounded, even the Bunny Hop, one finds, requires a different sort of hopping than the type I’ve been executing behind my walker for the past few weeks.
Happily, I discovered that many passages in the Alvin Ailey style are walker-friendly, and intricate routines in this genre can be choreographed that do not demand weight-bearing by the right leg. An example from a quotidian daily workout is pictured below:
August 17th, 2007 · Comments Off
Readers may recall from Contemporary Compliance Case Study, a post published just over a month ago, that I was concerned about my own adherence to a Physical Therapy regimen for a pulled muscle diagnosis.
Well, not to worry. As it turns out, PT, treatment with which I was, of course, fully compliant, brought about no symptomatic improvement, so a second appointment with the primary physician seemed prudent.
That clinical visit occasioned an x-ray to rule out a hip fracture prior to an anticipated referral to an orthopedic/sports specialist. It required, however, only one glance at the completed X-ray to transform the rule-out into a confirmed diagnosis.
The New Compliance Challenge
Three days and three inserted pins later, I was home, with strict orders (indistinguishable to the human ear from threats) from the surgeon to avoid weight-bearing on my right leg. Compliance with these instructions requires my constant use of a walker and, for long journeys, a wheelchair.
After reading posts on Heck Of A Guy, my personal blog, about my femoral neck fracture, subsequent hip pinning, and post-op orders to use a walker to avoid weight-bearing on the pinned hip, a younger friend suggested, “Please make sure to get a few ‘action shots’ of you [using the walker] walking around and post them!”
Now, one can hardly begrudge the inherent psychological drive of the young, hale, and hearty to observe the deterioration of their elders. Ridiculing photos of the impaired is, after all, at least somewhat more sublimated than shoving the old folks onto ice floes.
Still, because I found it difficult to believe a photo of me as walker-gimp would appeal to viewers other than (1) ungrateful whippersnappers all too eager to replace the Boomer generation who currently (and rightfully) run things and (2) individuals with a strong skew toward the sadistic, I deferred any action on that idea.
Since that original suggestion, however, I’ve received enough similar requests that, in acquiescence to the wishes of the Heck Of A Guy audience, and without passing judgment on the possible motivations – regardless of how sinister and perverse those may be, I offer this shot of me on my assigned apparatus, the pommel walker.
I apologize for the low level of expertise demonstrated. Snapping the shot by first setting the camera’s self-timer and then trying to be in the requested action pose when the shudder fired complicated the procedure to the point that I had little choice other than the simple loop dismount shown here. Despite several attempts, for example, I could never get the timing right for a photo of the handstands and as for those Russian Wendeswings, well, a picture of those would have just been grandstanding.
July 12th, 2007 · Comments Off
The Case Of The Patient Of The Woeful Countenance
Almost a month ago, I was blissfully vacationing with no more than the ordinary allotment of health hassles common to a guy in his mid-fifties. On the last full day of the one week trip, I began the same morning run I had completed each previous day. A half-mile later, a pain in my right leg became severe enough to abort the effort and limp back. Contrary to my expectations that the problem would resolve itself in a day or two, it persisted for three weeks, producing a pronounced limp and enough discomfort to make me wince whenever I had to bear weight on that leg and keep me awake at night. At that point, I was finally desperate enough to see my personal doctor who tentatively diagnosed a pulled adductor and recommended anti-inflammatory medications and physical therapy with further testing for other disorders if there was no relief on this regimen. A few days later, the physical therapist performed his examination and prescribed the exercises pictured in the graphic atop this post as well as twice
weekly PT sessions.
The Compliance Conundrum
The facts are simple:
- The exercises are routine: Three stretches and one strength move that require perhaps 20-30 minutes a day and are unlikely to cause side-effects
The twice weekly PT sessions are similarly routine
- My injury, while hardly catastrophic does cause me pain throughout each day and significantly limits my activities
- I understand the disorder and the treatment
- After only two days, I’m convinced that the treatment is likely to help; my only pain-free periods have been the 15-20 minutes that immediately followed completion of the exercises
- I have a reasonably good relationship with the physical therapist who seems competent and invested in my care
So why is compliance a significant concern to me? After all, I already integrate a 1.5 – 2 hour workout into every day (missing perhaps 10 days a year) for health reasons. And, my schedule, while full enough, is sufficiently flexible to accommodate the exercises and appointments.
Well, knowing that approximately half of all patients don’t adhere to their treatment in almost any healthcare situation may be a factor.
And I loathe stretching.
The only other negative that comes to mind is that I’m moderately miffed that I contacted this rehab facility because they advertised a satellite office near my home, but when I requested that office I was told that no appointments were available there for over a month – although they could fit me in to the schedule of their central, much less less convenient for me facility right away. I have no way of knowing the legitimacy of these circumstances, but I do have a sensitivity to being played for a sucker so there may be some residual negativity on my part.
Otherwise, this seems a no-brainer: Do a few stretches a day and drive a few miles twice a week for an appointment in return for a high probability of eliminating a painful, restricting disorder.
Nonetheless, on only the third day of the exercises, I feel the need to force myself to start the exercises and find myself looking for excuses to postpone them.
I don’t, by the way, have a solution. I’m just impressed with the problem.
July 2nd, 2007 · Comments Off
The Midlife Midwife Returns
Readers may recall Looking At Patient Compliance From Both Sides Now, the 11 April 2007 AlignMap post that introduced The Midlife Midwife, who in Patient Compliance had compared her own resistance to following her dentist’s prescription for ongoing care of her teeth (e.g., flossing, regular exams) with the recalcitrance of her own patients to adopt her recommendations for preventive health care (such as pap smears, mammograms, and exercise).
At that time, she had also decided to undergo the necessary dental work she had deferred for seven years.
It turns out that, as is often the case in healthcare, the decision to undergo treatment was not the end of the story. In Patient Compliance ACT 2, we learn that efforts to prepare her tooth for a crown led to an exacerbation of problems and the necessity of a root canal. Having previously endured more than my share of ministrations by dentists of widely varying degrees of skill, I am sympathetic to Midwife’s anxiety about dental work and the pain she is currently undergoing.
The good news, however, is that Midlife Midwife stubbornly persists in her determination to examine her own healthcare experiences for clues into how to better manage the patients in her practice:
So here I am examining what has happened with my dental health. I put off having care that I knew I needed for seven years because I get so anxious in a dental office. Then I put up with a sore tooth for over a month because I didn’t want to be a complainer and because once again my fear of the dentist got the better of me. I am again reminded why so many of my patients don’t come in for preventative visits and why they don’t always follow up even when something is wrong.
Even more impressive, she has translated these considerations into behavioral changes:
I’ve changed my tune at work. I used to give my patients a hard time about being late for their pap smears and mammograms. I would tell them all the reasons why they should have come in. I have been known to even mention the risks of some awful consequences in order to try and “scare them straight.”
Midlife Midwife’s new, more positively focused response to the belatedly compliant patient is along the lines of
It really doesn’t matter how long it’s been. We can’t change the past. I am just so excited that you are here today. (Big smile on my face) Today you and I are going to do what we can to be sure that your future looks good and healthy.
And, since I couldn’t improve on her own conclusion, I’ll close my post with her final words:
A huge thank you to my dentist for being so caring and doing a lot of compassionate work with this terrified midwife. My patients appreciate it.
Credit Due Department: Atop this post is a photo of an Iowa dentist, circa 1895, from the State Historic Society, Iowa City.
Tags: Experiential · Tips
Patient Compliance and Furious Seasons
Philip Dawdy has been blogging at Furious Seasons since September 2005 from this perspective:
What I am is a long-time psych patient who has become quite skeptical about where we are with mental health in this country. I believe in accountability and an honest exchange of ideas.
He is also an award winning professional journalist who has reported for years on mental health issues and who has interviewed doctors, researchers, and hundreds of individuals with psychiatric diagnoses, which he points out
… has led me to certain conclusions, some reasoned and some more emotional. But, ultimately, my conclusions still add up to one man’s attempt to make sense of mental illness in America.
While today’s title is lifted from The Norm, Hope And Statistics, Dawdy’s 26 April 2006 post, references to his high rate of adherence to his medication regimen are prominent and frequent throughout his posts. These posts, for example, directly address compliance:
The author’s disclaimers notwithstanding, Furious Seasons perhaps comes closer than any other blog to integrating the writer’s experiences as a patient and his point of view as a reporter in equal proportions. While posts can be strident, there is much to admire in his thoughtful, clearly written prose. As an example, I suggest a careful reading of the post discussing his notions on recovery: Slouching Toward Recovery. While I do not endorse all its ideas and recommendations, this post is a brave and honest distillation of years of experience that has been successful in managing major, potentially disabling symptomatology.
I am, naturally enough, especially interested in how patient compliance is treated by bloggers and can find no better way to conclude this post than with an excerpt indicative of Mr. Dawdy’s no-nonsense approach:
There’s very good evidence to support that getting treatment and sticking with it wins the game in the long run. Why more people don’t get that is beyond me. Why more people aren’t willing to commit to doing the hard work of finding a med combination that works for them without turning themselves into dunces escapes me. As much as I complain about meds, there is almost always a way to find meds that will work well enough to keep you from running crazy through life, even if they aren’t a perfect fit. Finding such a situation beats the hell out of the alternatives: death, jail, a shitty reduced life, unemployment, etc. To not work at finding treatment that works more or less is utterly irresponsible–and I’ll come back to that in a future post.
April 20th, 2007 · Comments Off
Life – With Diabetes – Goes On
Since I last wrote about Living With Diabetes, that blog has added more posts to its conveniently categorized “Compliance” section.
As I noted previously, these blog entries provide useful insights into a patient’s perspective on compliance that are not often available to a clinician during a treatment session.
I’m especially taken with an observations on the difference between disagreeing with a treatment recommendation and noncompliance as limned in these excerpts from Patient Gripe – Bariatric Surgery Suggestions
Often once I disagree with that treatment plan, I am immediately treated as a noncompliant patient.
The point of this? My doctors, especially my primary care physician know that I am a highly educated individual, know just about every facet of the diseases I’m am dealing with and know that I research everything. … As a patient, I’ll respect you infinitely more if you find a polite way to work it into the conversation, and then drop it when I respond intelligently in the negative.Funny, but that works with just about every treatment plan. Not just bariatric surgery.
For good measure there are a couple of comments that enthusiastically endorse this notion.
So do I.
I have long promoted, especially in How To (Correctly) Not Take Medications As Prescribed, differentiating between noncompliance (whatever that term means these days) and a communicated and acknowledged non-execution of a specific treatment recommendation.
While all manner of humanistic, sociological, and ethical principles can be invoked in support of this idea, my primary argument is based on clinical pragmatism:
The opportunity cost (in this case, the potential loss of improvements in the patient’s health that the recommendation would have hypothetically caused) of the patient not following the recommendation is more than compensated by the elimination of (some of) the changes patients unilaterally and surreptitiously make in the treatment plan. Because these deviations from the presumed treatment plan are unknown to the clinician, they are especially likely to lead to mistaken diagnoses and erroneous evaluations of treatment outcomes (e.g., a physician may assume a patient’s infection is resistant to the prescribed medication or that the original diagnosis was wrong because of lack of response when the actual cause was the patient not filling the prescription), which, in turn, lead to delays in or prevention of improvements in the patient’s health, geometric increases in healthcare expenditures, and damage to patient and clinician morale and the patient-clinician relationship.
Clearly, there are situations in which coerced compliance is justified; e.g., the treatment of deadly, highly communicable diseases and the treatment of patients with serious disorders who are cognitively unable to realistically appraise their condition. In the majority of cases, however, automatically categorizing a patient who refuses a treatment recommendation as noncompliant, with all the connotations that term carries, is, at best nonproductive, and is likely to inhibit – and perhaps destroy – treatment.
The Life With Diabetes posts can be found at Living With Diabetes On Compliance
Tags: Alignment · Experiential
April 16th, 2007 · Comments Off
Unanticipated Roles In The Drama Of Patient Compliance
In It’s what you signed up for at Codeblog, Geena explores the dilemma she and other nurses face in achieving patient compliance.
Geena describes “encouraging my post-op patient to cough and deep breathe all shift” and her frustration and disappointment when, at the end of the shift, it is apparent that, despite her provision of pain medication, proper instruction, and empathic persuasion, the treatment goal was not reached.
The post’s title, It’s what you signed up for, is derived from the point made by another nurse during a discussion about this all too common situation:
Maybe the patient was requiring too much encouragement from me to do what he needed to do to recover from major surgery. He “signed on” for this surgery and all it entailed, after all. At what point does the nurse’s responsibility end and the patient’s begin?
The appropriateness and effectiveness of various tactics (e.g., good cop/bad cop) are also considered. It was another standard strategy, however, dissolved the reluctance of Geena’s exemplar patient to participate fully in treatment:
Everything turned out okay for my patient. His family came in, I explained the importance of breathing exercises and they badgered him relentlessly into doing them.
In oversimplified terms, patient noncompliance, even if transient, brings the nurse’s (or any healthcare professional’s) philosophical commitment to patient autonomy into conflict with the importance of successfully executing the treatment plan.
The clinician’s role is also, however, influenced by multiple other factors, including but not limited to the following:
- Practical matters, such as limited time, staff, and other resources
- Professional and regulatory requirements
- Personal and professional expectations
- Local and cultural mores
- Environmental modes (nursing is typically expected to intervene more directly and forcefully, for example, in the case of a noncompliant ICU inpatient than with an resistant outpatient)
- The severity of the patient’s disorder
- The patient’s age, personality, attitude, and intelligence
My modification of the title of Geena’s post from It’s what you signed up for to Who Signs Up For What in the title of this post has two referents:
1. I understand the use of It’s what you signed up for as shorthand for “the patient has the final responsibility for following or not following the treatment plan,” but it is not a trivial point that much of the time patients don’t know what they’re signing up for. Some patients, for example, are unconscious, delirious, demented, intoxicated, too young, unable to communicate, or otherwise incapable of understanding or legitimately consenting to necessary treatment. Even intelligent, educated, attentive adults, however, cannot anticipate every requirement of treatment. I’ve been present at more than a few discussions of impending operations that would require some type of postoperative chest physiotherapy similar to that described in the Codeblog post to decrease the risk of pulmonary complications; in none of those discussions was the patient told, “The day after your chest is ripped open and then sewn back together, we’ll expect you to perform some respiratory calisthenics that will result in excruciating pain – for
your own good.” And, even if a patient signs an informed consent documents with such information in the fine print, how many operative candidates who know that the proposed surgery is necessary for a cure or palliation of their disorder, who are overwhelmed by an avalanche of data, and who may be worried about survival can be said to understand the details of what they are signing up for?
2. Who Signs Up For What also makes explicit the underlying theme of Geena’s post. It’s what you signed up for applies not only to patients but also to nurses, doctors, respiratory therapists, and all healthcare professionals. Garnering patient compliance is, as the cliche has it, part of the job description. My contention is that, like the postoperative patient facing a deep breathing exercise, we healthcare professionals may not have known exactly what we were signing up for.
In any case, It’s what you signed up for offers a useful perspective on patient compliance and raises some fundamental questions every healthcare professional would do well to address.
Tags: Experiential · Patient's Role
April 13th, 2007 · 1 Comment
Compliance, the 10 April 2007 entry in the the Got Liver? blog is also the most recent addition to my informal collection of posts offering insight into treatment adherence based, at least in part, on the writer’s personal experience.
The author of Got Liver? explains his motivation thusly,
In July of 2006 I was diagnosed with End Stage Liver Disease caused by Non-Alcoholic Steatohepatitis (NASH). I was given about a 50% chance of surviving one year without a liver transplant. On January 28, 2007 I received the Gift of Life from a 23 year old man. His generous act of organ and tissue donation and that of his family to honor his wishes not only saved my life but those of others as well. This blog is the story of my progress from diagnosis to transplant and beyond….
The Got Liver? Compliance post specifically addresses the transplant candidate’s preparations for and commitment to compliance with the medications, testing, and other portions of the pre- and post-transplant treatment plans. While this process, as seen from the transplant recipient’s point of view, is enlightening and the entire post is worthwhile reading, I found one section especially surprising.
I had been cognizant of transplant-associated compliance problems such as the economic costs of adherence, the difficulties of following the strenuous requirements of treatment protocols, and the ethical issues involved in ranking potential recipients for the too-few organs available based on the anticipated compliance capacity of the candidate (along with physiological criteria, age of the patient, and other factors). I was not aware, however, of the appqrently significant number of candidates who are openly and vehemently noncompliant, as described in this excerpt:
I have read several blog posts by people who are in the process of being evaluated for transplant. They have been very angry because they have been deferred or placed on inactive status on the list because of non-compliance issues such as refusing to get lab tests, refusing to take medication as prescribed, or simply refusing to show up at the designated time for appointments.
Still, these patients feel they have a “right” to the transplant because they’re sick. Some have even claimed to have taken their surgeons to task and threatened more or less to “take my business elsewhere” if the surgeon didn’t let them off the hook for their own refusal to follow simple directions. One alcoholic even threatened that she would go to Panama or Sweden and get a transplant. While she may have a chance in Panama if she can afford to buy off someone, I doubt she will have much success in Sweden since they tend to operate similarly to the U.S. in organ allocation. Still, she is angry that she has been deferred for a liver transplant because she refused sobriety treatment and then refused to have urinalysis to show she was not actively using alcohol!
This post is an interesting take on a healthcare scenario in which compliance is, all too literally, a life and death matter from somebody who has been there.
April 11th, 2007 · Comments Off
The Midwife’s Molars
While most AlignMap posts focus on research or articles from the medical literature about patient compliance, medication adherence programs, or clinical tactics to enhance compliance, recently I’ve been struck by the insights proffered by bloggers writing about their own experiences with healthcare compliance, either as clinicians or patients.
A few days ago, The Midlife Midwife published Patient Compliance, in which she compares the recalcitrance of her own patients to adopting her recommendations for preventive health care (such as pap smears, mammograms, and exercise) with her own resistance to following her dentist’s prescription for ongoing care of her teeth (e.g., flossing, regular exams).
Oh, and there’s that seven year history of avoiding treatment of those five molars with “deep fissures and cracks” that are on “the verge of breaking”
Her approach to the issue is thoughtful, her analysis of her own motivations candid and revealing, and her conclusions all the more heartening for her refusal to accept the easy, standard answers.
I don’t know the answer to how to change the situation. I do what Dr. S. did. I try to educate. I try to remove financial and physical barriers. I try to encourage women and allay their fears. I try to make their visits pleasant enough that they will return. Experiences like going to the dentist also remind me to be just a little more understanding of the reasons patients are non-compliant.
Notice: Spoiler Alert
She’s getting the molars fixed.
This post can be found at ~Midlife Midwife on Patient Compliance~.
February 5th, 2007 · Comments Off
The Devil You Know is a first person account of one patient’s perception of his problems with adherence to his HIV treatment regimen. It’s poignant and instructive. I’ve excerpted only a brief portion to give a flavor of the piece:
So I am staring at my pile of pills. Two Kaletra, an AZT, two Invirase, Bactrim. Add to the mix a Claritin and a couple of Tylenol for the inevitable headaches …
My adherence sucks. My history with the meds sucks. But whatever I have done, I have turned what could have, maybe SHOULD have been a plummet to the earth into a semi-controlled glide. It’s taken me a LONG time to get really sick, and my failed attempts, a month here, three months there, to adhere to therapy have bought me time. Time for the next big thing to come out, time for the research to move just ahead of my virus and it’s destination. Time for me a embark on crazy stuff that everyone does, from self-medication to serial dating to growing older, gaining gray in my hair and some perspective in my heart. But time’s up. So I gag down the pills, …
The entire post can be found at ~The Devil You Know~
October 13th, 2006 · Comments Off
Because the blogger at Living With Diabetes always writes with authenticity and thoughtfulness, I find her posts enlightening even when I intuitively disagree with her conclusions – or perhaps especially when I intuitively disagree with her conclusions.
She has a written a series of a half-dozen or so posts dealing specifically with adherence, prefaced with this explanation:
After watching DLife, reading Ground Rounds and lots of other articles I realize that many people do not get why patient compliance is hard. Since I am your average Type 2 patient, though a bit more motiviated, I think it will help everyone understand the whole mechanism, if I write on patient compliance.
These posts provide useful insights into a patient’s perspective on compliance that are not often available to a clinician during a treatment session. They can be found at
Living With Diabetes On Compliance
Noncompliance and A Decision Not To Follow A Treatment Recommendation Are Not Identical