Tailoring practice guidelines for real patients

Meeting physician-patient challenges, says the author, often requires persistence, tolerance, and the ability to compromise.

I spend much of my time perusing the latest guidelines for treating hypertension, diabetes, asthma, and other common ailments. Although I welcome evidence-based principles for the science they bring to the doctor-patient encounter, nowhere do they explain how to treat some of my toughest patients.

When the patient just won't cooperate

Regina, or "Reggie" as her family calls her, is a spirited 77-year-old Italian widow who lives with the only one of her five sons who is unmarried. Sedentary most of her life because of rheumatic heart disease, she slowly packed on pounds with pastry and pasta until her body was best described as "globular." Predictably, hypertension and diabetes set in about 25 years ago. In the past decade, she's developed atrial fibrillation, sustained an embolic stroke with residual left hemiplegia, and underwent a right knee replacement. Most recently, we found congestive heart failure, kidney failure, and infected diabetic foot ulcers in her paralyzed leg.

Reggie's son is fit to be tied over her skyrocketing sugars, her progressive illness, and, most importantly, her refusal to cooperate in managing these problems. "She loves to eat, loves her salt, and drinks water every time my back is turned." The cardiologist wants to replace her mitral valve, the orthopedist recommends six weeks of IV antibiotics, and the patient refuses hospitalization, IVs, or even a refresher course in diabetes.

I can't force this strong-willed woman to comply with the latest AHA, ADA, and orthopedic guidelines. But she's willing to compromise—on her terms.

For now, we've agreed on "palliative dialysis" with the aid of an understanding nephrologist in order to reduce her edema and congestive heart failure. She's willing to test her blood sugar more often and adjust her insulin doses as necessary, and we plan strong oral antibiotics with house calls from a saintly podiatrist to do what we can for her ulcers.

The cardiologist strongly disapproves, and the orthopedist is sharpening his saw. But Reggie and her son are much less stressed. Even if her life—or limb—is shorter as a result of her choices, Reggie feels the benefit of tasty meals without her son screaming at her is worth the tradeoff. Sometimes, success is a satisfied "sofa spud."

In the same vein (or perhaps fat-clogged artery), there's François, a brilliant, jovial, and rotund antique plane and World War II buff whom I visited shortly after his five-vessel bypass for severe coronary artery disease. Up until early middle age he'd been "flying high" on haute French cuisine, and he has no apologies. In fact, his bitterest complaint after surgery was not pain, but his low-salt, low-fat diet. "This is cardboard! How can they expect me to eat cardboard? Give me some real food!" It's folks like him that keep the cardiovascular surgeons rolling in dough (pun intended).

The tragedy of a life cut short

We've had a run on cancer in our practice this year, mostly in vigorous 30-somethings with promising careers and loving marriages. These are individuals who exercise, eat sensibly, and have had nary a cigarette, cheesecake, or licentious libation touch their lips.

A perfect example is Terry, an easygoing 32-year-old who was diagnosed with a rare, aggressive tumor when he presented to our hospital after a month of vague headaches and flu-like symptoms. He and his wife have a new house and are expecting their first child. Shaken by the diagnosis, they sought a consultation and ultimately surgery at a tertiary hospital. Chemo and radiation will be duly undertaken, although even treatment within the hallowed halls of Mayo would be powerless against disease that has already spread.

These decisions are difficult for doctors, patient, and family alike. Should the patient play chemo keno and the toxic radiolottery, hoping the one-in-a-thousand long shot pays off in a cure? Or should he concede to stark reality and enjoy his remaining days free of treatment side effects, packing a lifetime of dreams into a few short months? Either way, I will support his decision and encourage him to cherish each day as another opportunity to appreciate the love and simple pleasures that have graced his life.

Doing what's best, one patient at a time

In caring for people with chronic illness, I confront patients who have varying degrees of motivation, or none at all, to change. Without lifestyle alterations, most interventions for persistent conditions are quite limited. Along this line, my colleague quoted an old joke about how many psychiatrists are needed to change a light bulb. "One, but the light bulb has to want to change."

Reggie's and François' stubborn resistance to change was clear. With such people, I find it less frustrating if I focus on maximizing comfort and dealing with complications as they arise, rather than working unilaterally to achieve the impossible. I admonish from time to time and warn of the consequences of noncompliance, but I don't abandon patients who show up for appointments and follow at least a few of my recommendations. Eventually, some are ready to quit smoking or head to the gym.

For the Terrys of the world, it's human nature to hope, and to leave no stone unturned in trying to extend a tragically shortened lifespan. However, I can equally understand and support a decision for hospice and palliative care.

In considering the care of these emotionally draining patients, I was reminded of one of my favorite books as an adolescent, With Love from Karen by Marie Killilea. This true story, still worth a read with a box of tissues handy, describes a girl with cerebral palsy who strives mightily to walk with braces and crutches. At a pivotal moment, she makes the decision to abandon the pain and struggle of walking to accept the freedom and increased mobility of her wheelchair. For her, this was not a defeat, but a liberation. As physicians, we can learn from the wisdom of patients, young and old, who say, "Enough's enough."

To me, the art of medicine lies in discovering and understanding a patient's values and working to integrate them into my treatment goals—or to adjust goals when it's clear that we're butting heads rather than meeting minds. With all patients, I strongly endorse good nutrition, exercise, stress reduction, and full compliance. In tough circumstances, however, I've learned to sometimes pass the salt, and to serve the terminal cancer patients who say, "Give me the mustard," as well as those who say, "Hold the Mayo."

The descriptions of patients in this article are based on real individuals, but have been modified to protect patient identities.

 

Elizabeth Pector. Tailoring practice guidelines for real patients. Medical Economics Aug. 6, 2004;81:30.