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Patient-Centered Care Should Minimize Post-Surgical Surprises

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Rick Hamlin, in an op-ed essay last week, recounted how his surgeon assured him that he would be able to go on a family vacation to Spain three weeks after his open-heart surgery.  In the New York Times piece, Rick described his disappointment and despair at the unexpected six months of fatigue, pain and depression that constituted his recovery.

Letters from patients and physicians alike confirmed that a six-month recovery from such surgery is pretty typical. They also noted that the surgeon's unrealistic prediction about Rick's recovery is fairly common.

I'll leave it to others to speculate about why a physician would so mislead his or her patient.

My concerns, rather, are (1) that we patients along with our loved ones must now assume considerable responsibilities following surgery; (2) that all of us are poorly prepared to do so; and (3) that such optimistic predictions about our recovery hurt us by undermining realistic planning. Minimally invasive techniques and other advances in surgery mean we leave the hospital quicker but sicker and find ourselves managing drug, wound-healing, dietary and rehabilitation recommendations on our own with only the help of our family and closest friends.

This largely unrecognized burden on families is beginning to be addressed through regulations that require that we are provided with information about our care upon discharge after surgery BUT only to some of us'only if we ask'only some of the time. One example: a new regulation for meaningful use of electronic health records.

This is an important gesture, but only a small one.

If you have ever come home from the hospital after surgery worried that the pain will be too much to bear, that you won't be able to get to the bathroom, that your coughing will split your incision open, that there is no one to help you during the day when your spouse is working ' or if you have ever cared for someone with even one of these concerns, you know how critically important it is to be prepared.

We need to know what is normal and what dangers to look out for.  We need to know if we can care for ourselves.  We need to know when and how to take the drugs, what to eat and drink, what to strive for in our breathing and mobility, how to take the drugs and use the devices the list goes on ' if we are going to benefit from the surgery and recover optimally.

Current efforts to deliver care that is 'patient-centered' pay little attention to ensuring that we have the knowledge, skills and support required to care for ourselves and our loved ones once we leave the doctor's office or hospital.

Upbeat, positive surgeons who blithely assure us we'll be back on our feet in no time constitute one more signal that providers fail to recognize our growing responsibilities for post-surgical care and the impact of those actions on our recovery.  Such messages obscure our need to prepare for a convalescence that can last for months and affect our abilities to fulfill work and family responsibilities.

There is no way we can prepare for every contingency.  But there is a big difference between preparing for a vacation in Spain in three weeks and a slow six-month recovery.  We need to know which it is.

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman


Tags for this article:
Medical/Hospital Practice   Jessie Gruman   Communicate with your Doctors   Make Good Treatment Decisions   Participate in your Treatment   Inside Healthcare  


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