It Is The System, Not The Patient, That Is Difficult

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.

5 thoughts on “It Is The System, Not The Patient, That Is Difficult

  1. Thank you for your insightful and thoughtful comments. I am the executive director of a non profit organization called Family Voices of Minnesota and the parent of a child born with complex health care needs. May I share your article with other families and professionals through our newsletter?

  2. Well presented and well said. The story of my life with now 20 y/o ex-preemie twins with cp! The Colorado Health Foundation made a video showing Why Medicaid Matters and how systems have conflicting rules and regs.


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