AlignMap

Now this is interesting – and in a good way for a change

Using Design To Investigate and Address The Unpredictable Emotions and Behavior Of Patients

Brandon Discusses the Role of Emotion in Experience with Ryan Armbruster, Mayo Clinic is an essay arising from a conversation between Brandon Schauer, an experience design director¹ for Adaptive Path, a design firm, and Ryan Armbruster, Director of Mayo Clinic’s SPARC Innovation Program.² Much of the discussion centers on the re-engineering of the medication prescription process as an example of a SPARC program project.

Armbruster describes how they assessed the situation and devised a system using “Decision Cards” that incorporates the specific patient’s concerns, understanding, and emotions into the treatment planning process to give that patient a greater investment in the decision, which, in turn, could lead to improved adherence to that treatment.

I know too little about the system they are implementing to comment on its utility or likelihood of success. I am convinced, on the other hand, that Armbruster is onto something that healthcare professionals as a group seem to have overlooked:

Again, the report of this stimulating conversation can be found at  Brandon Discusses the Role of Emotion in Experience with Ryan Armbruster, Mayo Clinic

Further Reading: Those interested in Mayo’s Sparc will find a plethora of articles available. My favorite, which I heartily recommend, especially to those discovering SPARC for the first time, is a piece from Fast Company, a business periodical:   A Prescription for Innovation

1. I’m unsure of the functions of an “experience design director,” but I do like the sound of the title and am currently considering adopting a variation of it for my own designation↩
2. SPARC is a clinical innovation lab that uses principles of design to focus on the patient experience.↩

Thoughtful Commentary On Core Issues

Source: Dealing with non-compliance
The Pharmaceutical Journal Vol 263 No 7074 p922-923, December 4, 1999 Forum

While the majority of AlignMap posts deal with research, the topic today is an editorial emanating from a Drug and Therapeutics Bulletin seminar on “How to look after patients who fail to care for themselves.”

Although this seminar was held in 1999, its content, the economic, ethical, and clinical aspects of treating noncompliant patients, remains pertinent today. This brief (less than 2000 words) article consists entirely of a series of comments from seminar participants that are insightful, thoughtful, and sometimes provocative and is well worth reading.

This editorial can be found at ~ Dealing with non-compliance ~

Medical Signs and (Their) Symptoms

Welcome To Dr. Friendly’s Office

Captured during a doctor’s appointment by the patient, an admirably camera-ready friend, the sign in the above photo is an exemplar of everyday clinical office practices that are incongruent with the highly promoted and almost universally endorsed patient-centric approach (which is apparently interwoven with but not identical to patient empowerment) held by some to be the key to enhancing adherence to treatment.

It’s also evil on so many levels that I find it difficult to decide which I find most offensive.

Nonetheless, I’m willing to give it a shot.

Medicine Would Be A Great Business If It Weren’t For The Patients

I certainly admire, for example, how the words, “HMO Patients,” are highlighted in red against the black type of the rest of the sign. Having been covered by an HMO in the past, I appreciate the joy of being in a population designated for special treatment. I was, however, disappointed to discover that this practice does not yet require HMO patients and other clients, such as those funded by public aid, who create special (i.e., fiscal) concerns for that office to wear armbands identifying them to staff and other patients.

Mark My Words
The daring insertion of an exclamation point after “Orders given by doctor require referrals” (or, more precisely, “ORDERS GIVEN BY DOCTOR REQUIRE REFERRALS”) is outdone only by the double exclamation points added to the concluding line.

I am, as noted in Provocative Punctuation Peccadillo, not a fan of the exclamation mark.¹ In that previous post, in fact, I suggested the following homebrewed criterion for the usage of that potentially toxic punctuation:

If I Speak Slowly and Loudly, Surely Anyone Who Tries Can Understand Me
And, just as that double exclamation mark at the end of the sign overwhelms the solitary exclamation mark used earlier, that final demand, “DON’T FORGET TO ASK FOR ONE,” is far more implicitly insulting than the preceding “ORDERS GIVEN BY DOCTOR REQUIRE REFERRALS.”

After all, “ORDERS GIVEN BY DOCTOR REQUIRE REFERRALS” could, its all caps format and brusque wording notwithstanding, be arguably characterized as informational – in the same way that commands to “shut up and sit down”² shouted at a misbehaving, recalcitrant, unreliable, not too bright second-grader are informational – but arguably informational nonetheless.

On the other hand, what possible motivation prompts the final demand, “DON’T FORGET TO ASK FOR ONE,” if not the conviction that the patient not only has to be instructed that “orders given by doctor require referrals” (my apologies – the continued replication of the all caps mode used in the sign is just too fatiguing to be continued here) but he or she must also be reminded, with the emphasis lent by upper case type, that since a referral is required, then the patient must also, dammit, ask for the referral.

Location, Location, Location

There’s more. This sign – or, hypothetically, even an alternative with less adamant language – might be of use to a patient seeing the physician serving as the HMO gatekeeper. Oh, that reminds me, doc. I need a referral slip before I see that orthopedic surgeon you recommended.

It could conceivably be helpful even if the patient were in the waiting room of the consultant. Oh, phooey, I need a referral I don’t have. Well, at least I didn’t waste 30 minutes waiting for an appointment that isn’t going to happen.

This sign, however, is actually located in the examining room of the consulting doctor.

Yep, once the patient has arranged the appointment with the consultant through his or her primary care physician, has shown up at the consultant’s office at the assigned time, has waited for the doctor to finish with the patients higher on the list, and has finally arrived at the ultimate destination, the examining room, where the triumphant entrance of the MD-ordained man (or woman) of the moment is to take place, then and only then does that sign come into the patient’s view.

At that point, what advantage does the patient garner from this information? If the patient has the referral in hand, the sign is redundant. And if the patient lacks the required referral, what choice is left other than confessing his or her failure and slinking off to re-start the entire process of contacting his or her primary care physician to obtain a referral to see the consultant. The only apparent advantage to that which accrues to doctor’s office; i.e., the doctor’s time isn’t wasted on a patient whose third party coverage won’t pay for a consultation without the referral documentation.

The Missing Line

Despite these impressive strengths, this sign is, I contend, incomplete. Much as an archaeologist deciphers a previously untranslated ancient language by extrapolating from the available textual content and taking into account the apparent intent and use of the document, I have analyzed this sign and am confident that I can elaborate the thought behind the sign as well as further emphasize its tone by augmenting the original language with a single word and the appropriate sequential punctuation.

Check it out.

Footnotes

1. I have long described the exclamation mark as the grammatical equivalent of laughing at one’s own joke, believing that metaphor to be my contribution to the banter of punctuation debates. It is only in the past several days that I have discovered that one F. Scott Fitzgerald appears to have a prior claim to this phrase, as used in his instruction, “Cut out all these exclamation points. An exclamation point is like laughing at your own joke.” Phooey.↩
2. Of course, “shut up and sit down” lacks the splendid ambiguity of “ORDERS GIVEN BY DOCTOR REQUIRE REFERRALS,” a concatenation of words replete with medical connotations which, in a master stroke of passive-aggressive communication, can be accurately decrypted only if the reader already knows the rule which it denotes.↩

The Osteoporosis Symposium, Research, and Pharma

According to Big Pharma is big dog at symposium, a story by Barbara Quart published in the May 28, 2007 Berkshire Eagle, a seemingly unlikely periodical for such an article, the writer attended the 7th International Osteoporosis Symposium in Washington, D.C. to educate herself about her own diagnosis of osteoporosis but learned more than she expected about the interplay between Pharma-sponsored research and marketing.

A few excerpts that readily provide the essence of the article’s content and tone follow:

Ms Quart’s bottom line is easy to anticipate but nonetheless poignant:

In many ways, Ms Quart’s experience is an affecting example of the concept discussed in a previous post, Does Mistrust Of A Pharmaceutical Manufacturer Cause Patient Noncompliance.

It is also yet another example of the complex set of interlinked factors that have an impact on patient compliance.

Blog Recounts Compliance Challenges Of Bipolar Blogger

The Master Of Irony Blog

Master of Irony is a good example of patients writing about their experiences with a treatment regimen that can be as difficult to manage as the disorder being treated.

“Just Me” is the sobriquet of a blogger who has been diagnosed with bipolar disorder and is herself a mental health worker. Her blog includes much more than patient compliance issues but adherence plays a fundamental role in so many aspects of the life of anyone with a chronic disorder that it inevitably becomes a part of and is sometimes the primary focus of many entries in this blog.

The title of this post, “I Am Non-Compliant And It Sucks” is lifted from a message written to Just Me that triggers a full-fledged consideration of patient compliance at Dear Just Me, the post that initially caught my attention.

Since then, however, at least two postings have also dealt directly with compliance:

Please explain this/why I want to quit meds sometimes

Pill calculus

An excerpt from the latter entry is characteristic and poignant:

The posts are thoughtful and clearly if casually written,¹ and, at least by my reading, demonstrate a growing self-awareness that is endearing.

Commentary

I recommend Master of Irony and some other patient-generated blogs both for the solutions to specific noncompliance problems they may offer and, even more significantly, for the insight they provide into the psychological processes attendant to compliance management from the patient’s point of view.

As is true of blogs in general, blogs written from the point of view of patients range from barely coherent to admirably lucid.

In addition, these healthcare-permeated blogs, by their nature, may be composed of rants about incompetent doctors or paeans about clinicians who became the means of salvation, invectives about overdependence on drugs or the advocation of one or another medication that was key to improvement in one case or another, invocations of spiritual or mystic powers or cynical dismissals of any treatments that doesn’t carry the AMA seal of approval, etc., etc., etc.

Some discernment on the part of the reader is necessary.

Nonetheless, I hold that blogs such as Master of Irony and Sick Girl Speaks offer an an unparalleled opportunity to garner a sense of how compliance works – or doesn’t work – without the layers of conscious or unconscious distortions that may prevail in a face-to-face meeting between a patient and physician.

Reading such posts is a shortcut to understanding that took me years of experience to accumulate.

Footnotes

1. Yesterday’s post, for example, begins “No more puking so I figured it was time to get a post up that did not focus on that.”↩

Clinicians and Patients Differ In Perspectives On Compliance Issues

A report from Consumers Union developed from their survey of more than 39,090 subscribers last year has some implications for patient compliance:

• Patients almost unanimously said they “completely” or “mostly” followed their doctor’s advice. But according to a separate survey of 335 primary-care physicians drawn randomly from a national panel, 59 percent of doctors said their patients often failed to adhere to the prescribed course of treatment. This nonadherence from patients ranked first among troublesome patient behaviors listed on the survey.
• Two-thirds of patients reported that doctors never brought up the costs of treatments and tests.
• Among patients who received prescriptions from their doctors, 31 percent reported that their doctor didn’t adequately explain possible side effects.
• Almost 40 percent of patients researched their medical conditions online. But 41 percent of doctors surveyed said their patients often showed up poorly informed because of bad information found online.

Source: Consumer Reports Survey: Patients and Doctors Disagree On Some Essential Issues The complete report is available in the February 2007 issue of Consumer Reports.

My question to people is “Do you want to be well?”

An article from the Hattiesburg American¹ reports on Patty Duke’s presentation at the the Women’s Life Conference.

Duke, best known for playing “identical cousins” on the Patty Duke Show, recounted that after her show was canceled when she was 19, she experienced the first symptoms of bipolar disorder. She became pregnant, married a man who came to her apartment to perform routine maintenance work, rented a Learjet to fly around the country, and bought “four Mercedes-Benzes in an afternoon.” Her disorder was diagnosed when she was 35, at which time she began treatment with lithium, which she still takes.

Duke identified compliance as an especially important aspect of treatment:

Footnotes

1. Duke shares struggles with mental illness By Nancy Musgrove Hattiesburg American April 30, 2007↩

Carol Shields is one of the writers I most admire. She authored ten novels, including The Stone Diaries, which won the Pulitzer Prize for Fiction as well as the Governor General’s Award as well as four collections of short stories, a number of plays, several books of poetry, some literary criticism, and a biography of Jane Austen.

In a post on my personal blog,¹ I wrote

Carol Shields CBC Interview

I recently happened onto an interview Shields gave to the CBC which the network’s guide describes thusly: In February 2000, she [Carol Shields] spoke candidly to Writers & Company host Eleanor Wachtel about her illness and how it changed her writing.

It is a poignant, gracious, unsentimental dialog that addresses living with cancer, pursuing ones passion despite the deadly diagnosis, writing with ones head and heart, and being human.

I include it here for the especially well articulated insight it provides into what it means to deal with a chronic, deadly disorder every day and the consequent impact on adherence to treatment.

The interview can be found at CBC Interview: Carol Shields on living with cancer

Footnotes

1. Other posts on my personal blog also include Carol Shields, including Carol Shields and Neruda at the Heck Of A Guy Internet Sunday Salon and Carol Shields On Living, Writing, Cancer, and Julie↩
2. Julie was my much-beloved, fiercely smart, extraordinarily sexy wife, who died in 1999 from cancer diagnosed the week of our wedding nearly 20 years earlier. She was also a prize-winning writer. This blog includes many other posts about her and the unlikely but true story of our romance (See Julie FAQ) as well as several of her short stories and other pieces (at Julie’s Writings and Unpublished Julie.↩

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:

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:

Commentary

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.

Advice To Imperfect Patients Dealing With Imperfect Clinicians

In the post, Squeaky Wheel, Tiffany at sick girl speaks describes three examples of severe breakdowns of patient-clinician communication relationships and concludes with this advice:

She goes on to postulate that the most effective stance a patient can take vis-a-vis ones doctor is that of “a humble, polite, persistent squeaky wheel.”

Squeaky Wheel is representative of the other entries on this blog, each post focusing on managing a different aspect of living ones life while also managing ones disorder and treatment.

Her recommendations and vignettes are based primarily on her own experiences as a patient with a chronic disorder (Cystic Fibrosis), undergoing extensive treatment, including not one but two double lung transplants. who has inevitably dealt with many healthcare professionals over many years.

Commentary

As a physician and as the spouse of a woman who was treated for cancer over a 20 year span, including multiple surgeries, hospitalizations, and renal dialysis, I’ve been struck by the impression that among long-term survivors of a chronic disease, there seems to be a disproportionately large number who are also aggressive, knowledgeable, cynical, hypervigilant, and, all too often, embittered from too many battles with the healthcare professionals.

I hasten to emphasize that this is, indeed, only an impression, and I have no scientific evidence of such a trend. And, I am aware that “squeaky wheels” do engage more than their share of attention so that group may stand out in my mind. For what it’s worth, conversations with oncologists, nephrologists, endocrinologists, and others who treat large populations of chronically ill patients indicate that they see a similar pattern.

Regardless, one wonders if such a style of dealing with life in general or, at least, with the healthcare establishment might not increase ones chances for survival.

The approach to healthcare Tiffany advocates, i.e., being “a humble, polite, persistent squeaky wheel,” seems a modulated, less miserable version of the caricature I describe. And, while that model also lacks research-verified support, it is intuitively appealing and appears a rational approach to the patient role.

Reading this though a clinician’s eyes, it seems almost inescapable that, unless claims of perfection are maintained, a physician has an obligation, at a minimum, to accept and attend to patient-initiated interventions of the sort suggested by Tiffany without defensiveness. And, it could be argued that healthcare professionals have the responsibility to make it explicitly clear to their patients that “squeaky wheel” behavior on their part is not only tolerated but expected and encouraged as a strategy to lessen the risks of untoward outcomes resulting from those inevitable errors wrought by a clinician’s forgetfulness, too-busy schedule, or just the limitations of being human.

I find much to admire otherwise about this blog’s perspective. Panaceas and magical solutions are eschewed, clinicians are presented as fallible but not necessarily villains, and a version of patient empowerment is promoted that is predicated on pragmatism rather than political principles.

I believe this material could prove helpful to patients. I’m certain, however, that clinicians could benefit from considering such a point of view. The availability of blogs written by those who have survived serious disease and serious treatment for extended periods is an invaluable opportunity to garner the patient’s perspective from a much different point of view than that we may see in office visits or during hospital rounds.¹


Footnotes

1. Other blogs that offer a thoughtful patient’s perspective have previously been discussed in The Misdiagnosed Patient and You have to take your meds. Period. You do not negotiate.↩

Last week, I serendipitously discovered within hours of one another, Jerome Groopman’s How Doctors Think,¹ which focuses on the reasons doctors misdiagnose a significant number of their patients and, because of a comment she made to a post on this blog,² the story of Trisha Torrey, who was the victim of a misdiagnosis of potentially catastrophic proportions.³

Trisha Torrey’s medical misadventure is fascinating – as well as scary – reading that complements Groopman’s book. That narrative can be found at
~Who is Trisha?~

Ms. Torrey’s misdiagnosis and her subsequent course led to her current career as a patient advocate and the creation of her advocacy web sites at ~EPA Websites~ and her blog at ~Every Patient’s Advocate~

While Ms. Torrey’s inclusion here is primarily the result of the fit between her medical history and Groopman’s book, I also believe that patient advocates could play an important role in improving adherence by helping, as Groopman suggests, patients understand how their doctors operate.


Footnotes

1. See Helping Patients Help Their Doctors↩
2. The comment referred to my March 12, 2007 post, Coaching Patient Compliance↩
3. Her comment had no direct connection to her history of being misdiagnosed↩

How Doctors Think by Jerome Groopman

While my comments on this book were entered on my personal blog, the author’s premise has significant implications for the patient-clinician relationship and for compliance and is thus relevant for the professional healthcare audience as well.

My observations can be found at ~The Good News Is That 80% Of The Time The Doctor Is Right~