The myth of the difficult patient: Blame the system instead

As a pediatrician at a busy county clinic with close proximity to pediatric specialists, I care for a significant number of children with special health care needs. Instead of colds and ear infections (though there are those too), my days are often filled thinking about gastrostomy tubes, tracheostomies, and ventriculo-peritoneal shunts. I sign orders for specialty formulas and nebulizer machines. Many of my patients have thick charts and diagnoses like hypoxic-ischemic encephalopathy, chronic renal failure, and achondroplasia. And, I wouldn’t have it any other way. These kids and their families have taught me more than I can possibly put into writing. About medicine. About life.

But, all too often these families are labeled “difficult.” Patients are called “difficult” by those in the health care world for many different reasons, but it seems that families of kids with special health care needs face this label more often than most. When someone tells me my patient’s parent is being “difficult” what they often mean to say is, “time consuming,” “asks too many questions,” or “is too involved.”

Granted, sometimes these encounters are tough. For various reasons. Often these kids are given a fifteen minute clinic visit, when what they really deserve is an hour or more. Sometimes I am missing the documentation of their most recent specialty visit. There may be issues with the home care or equipment companies. I must confess that, in moments of frustration, the phrase “difficult patient” has probably passed my lips. But, no more.

Here’s why.

  • Starting with their child’s birth, parents of many of my patients have had to adjust their hopes for what their child’s life will be and begin a life that is clearly outside of anything they could have ever anticipated. They have frequent doctors’ visits, therapy sessions, and equipment to obtain and learn to use. For some, almost every waking moment is consumed by the care of their child. Many are chronically sleep deprived. They rise to this challenge with grace and dignity.
  • Some of these families have faced gut-wrenching decisions about whether they can take care of their child in their home, or whether the care is simply so complex that the child is safer in a long term care facility. Many of these parents have already had to endure end-of-life discussions regarding a very young child.
  • When these families seek care in an emergency room or urgent care it is the parents, almost without exception, who know the most about their child’s diagnosis and treatment plan. They often face a delicate task of explaining to physicians what needs to be done while at the same time respecting the training of medical personnel.
  • These families, by necessity, become fierce advocates. Given frequent contact with the health care system, they have likely already faced a medical error or misdiagnosis at some point.

So now, when a situation feels difficult, I take a deep breath and ask myself why.

Am I pressed for time? Am I feeling uncertain?

If the parent seems frustrated I ask them about it. Some amazing conversations have started with, “You seem frustrated. Can you tell me about it?”

I make a conscious effort to respect the family’s experience. Their intimate knowledge of their child. The instinct that years of experience and limitless love has given them. Things that my training, in a million years, will never teach me.

I try to listen. Truly listen. This is often the best medicine.

And, often, things suddenly don’t seem so difficult for either of us anymore. A partnership begins to form.

But, don’t take my word on this. Heed the words of Michelle Mayer, PhD . She was a mother, a researcher, a self-described “difficult patient,” and far more eloquent than I. In 2008, just prior to her untimely death, she wrote,

All too often, my care involved abrupt, problem-focused visits that were a poor substitute for the patient-focused encounters that chronic illness really requires. Why? Three reasons spring to mind: who we train to provide care, how we train them, and how we pay them. Until we create a health care system that trains and supports providers who can listen to and communicate with patients effectively and that financially rewards these providers for doing so, my story will be a common one … ultimately, improvements in patient-provider communication will require a willingness to bridge the deep divide created by notions of professional dominance and a passive patient role. We will need to encourage patients and physicians to relate to each other as fellow human beings, each with much to bring to the examining table.

Please read Dr. Mayer’s full Health Affairs piece and her moving blog, Portrait of a Dying Mom. Even after her death, her words teach us essential lessons.

It is the system, not the patient, that is difficult.

Heidi Roman is a pediatrician who blogs at My Two Hats.

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  • http://www.facebook.com/Cheryl.A.Handy Cheryl Handy

    I had diagnosis of cancer and chronic tibial osteomyelitis for many years. I was a “difficult patient” because physicians didn’t know how to treat me. Or, they knew how to treat me but, the first orthopedic surgeon performed unsuccessful surgery and no other orthopedic surgeon wanted to “clean up someone else’s mess.” (ps. I never sued any doctor who allegedly did unsuccessful surgery bc its about clinical judgment)

    As I searched for doctors who could/would help me, I learned a lot about osteomyelitis. (And ironically, my dad died of complications of OM nine months before I was diagnosed.)

    It took over two years for me to find a brave group of surgeons and infectious disease physicians to treat me. It meant 3 months in a hospital in Chicago last summer. But the osteomyelitis is resolved. I am even rehabbing, jogging again.

    Lesson: Don’t punish patients just because other docs couldn’t help us.

    • N N

      (ps. I never sued any doctor who allegedly did unsuccessful surgery bc its about clinical judgment) — so in others words, you wanted to sue bc you didn’t like the outcome, not bc of actual malpractice. Good to know.

      • http://www.facebook.com/Cheryl.A.Handy Cheryl Handy

        I hope you arent a physician or scientist. Poor logic. Bad science. Sarcasm is poor people skill.

        Of course I did not like the bad outcome of the first surgery. But the poor outcome is a reflection of surgical skills and clinical judgment at a time when the OM was acute.

        I don’t believe in medical malpractice lawsuits for myself bc (like my situation) doctors practice medicine with their clinical judgment. And, it is near impossible for another doctor to put himself into the first doc’s clinical state of mind.

        I also didn’t sue when my dad died from OM (a disease that is neither genetic nor contagious – dad & I just shared same orthopedic surgeon) for same reason-clinical judgment. I would never sue for med map – but I do support @SorryWorks

        • http://twitter.com/NCBeernut Scott

          Actually he is right. You would have absolutely zero grounds for suing even if you wanted to. It is crazy for you to even mention suing. There MUST be negligence and damage caused by that negligence. Of course, people get away with it still via settlements, but those people are stealing money from our healthcare system and they have a special place reserved for them.

          That said, I am sorry the surgery didn’t go well for you. I am glad to see that you found a team to continue with you.

          • http://www.facebook.com/Cheryl.A.Handy Cheryl Handy

            I have no interest in getting into the specific of my situation. So, you have no way of knowing whether there was negligence or I was damaged or permanently disabled.

            I respect clinical judgment and would never ask another doctor to Monday morning quarterback clinical judgment.

            Not sure why the virtual attack on me. I support doctors’ clinical judgments.

    • http://twitter.com/cartooninperson Ashley Ashbee

      I think you speak to the privilege often required to get better care with complicated issues: you need to have the resources, skill set and support. I’m so sorry you had to fight. I’m so sorry only certain people were willing to help and that YOU had to find them. It shouldn’t be like this. I’m glad your hard work paid off.

      • http://www.facebook.com/Cheryl.A.Handy Cheryl Handy

        TY Ashlee. It should not be so difficult for sick patients to get care.

  • DavidBehar

    The sole duty is to the patient. Entitled, disruptive parents should be crushed. I priced going to court to take health guardianship away for medical neglect, $3000, cheap compared to the damage done by these parents, scapegoating everyone else but themselves for their child’s handicap. In one case, child welfare authorities took care of the entire process at no expense to the health provider.

    If one has a difficult condition, then extra deference to the talent, knowledge and skills of the doctors is a good idea, rather than bullying and harassment of the doctor.

    • http://www.facebook.com/Cheryl.A.Handy Cheryl Handy

      Really? Sole duty is to the patient? The patient is the vulnerable part of the doc-pt relationship.

      My error was in trusting the docs and system for way too long. If the patient conditions deteriorates and the doc has no idea what is wrong then the doc should find a referral. Absent the doc having the professionalism to say “I don’t know,” the patient must cut bait and find a new doctor that can diagnose and treat.

    • maryhirzel

      Puke

  • DavidBehar

    As an indicator of entitled bullies, a patient who is more interested in a relationship with a doctor is usually not sick enough. When in a lot of trouble, I want my condition to be gone. I have no interest in any relationship with my doctor save an answer to my being in deep health trouble. Make it go away. An hour’s relationship building would cause annoyance in me at the lack of professionalism to the extreme. The best doctor is the one who correctly spots in the diagnosis in a minute, and knows exactly what to do, and solves the problem on the spot. The faster the better in my book.

    I certainly will not harass my potential savior. I am the father of a child in renal failure. I can confirm that every day in a hospital had a life threatening medical error to be caught before it could dispatch my child. Yet, becoming an angry bully never crossed my mind in the least bit.

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