When Harm in the Hospital Follows You Home

March 21, 2013

21 Mar (PROPUBLICA) – A slip of the scalpel, an invisible microbe, a minute miscalculation. It’s estimated that something goes wrong for more than one million people per year during a visit to the hospital. Some patients experience a full physical recovery. Some are never fully healed.  But even if patients are lucky enough to physically heal, their lives may never be the same. Sleep becomes elusive, relationships break apart, and a wall of silence appears between patients and the doctors they trusted.

“How is it possible to move past medical harm when every single aspect of life is impacted by it – when absolutely everything a person believed about doctors, lawyers, oversight agencies, insurance companies is turned upside down and inside out?” – Robin Karr, patient harm survivor

What follows is a conversation of sorts between some of the 1,550 members of the ProPublica Patient Harm Facebook community [1] and Dr. Gerald Monk, a professor at San Diego State University who specializes in dealing with the aftermath of patient harm for both patients and providers. ProPublica asked group members to share their questions and thoughts about the aftermath of patient harm, and then got Monk’s response. What emerges is a portrait of the long journey that begins after the unthinkable happens.

Monk’s comments are not a substitute for treatment by a mental health professional. They have been edited for clarity and length. Each quote in italics comes from a member of ProPublica’s Patient Harm Facebook group.

PP: What symptoms can survivors of patient harm expect?

“I find I think about what happened day and night.” –  KariAnn Syna 

“Survivors have “very real PTSD symptoms, including avoidance, difficulty sleeping, etc.” – Debra Van Putten

“I experience ‘flashbacks.’” – Georjean Parrish

Dr. Monk: The psychological symptoms are similar to those people suffer when exposed to physical, sexual and psychological violence. What all these things have in common is that they take place in settings where we reasonably anticipate that we will be safe and secure. We tend to believe the maxim that the doctor will do no harm.  The symptoms can be physical, such as headaches and sleeplessness; or psychological, like depression, anger, guilt and being vulnerable to drug abuse.  Patients can even blame themselves. A survivor of harm surely knows others that have had the same medical procedure without suffering harm, and so they can feel they somehow contributed to the error because they were at the wrong place at the wrong time with the wrong health care provider.

 PP: Many group members expressed feelings of betrayal by the health professionals and authorities they thought were there to protect them. What phenomenon are they experiencing?

 “A patient who is denied validation for their medical injury is betrayed by the medical system they have learned to trust as an official authority. It is a shocking experience to realize that everyone one has thought about trusting this authority is suddenly wrong.” – Garrick Sitongia

Dr. Monk: Patients can feel especially violated in the context of health care. Not only do patients anticipate being safe and secure, they expect to be healed. Following an adverse medical event, a patient may experience a lifetime of heartbreaking anguish and suffering.

PP: Group members describe a related problem. Others are reluctant to hear their new understanding of the health care system and dismiss them as crazy or tell them “it’s all in your mind.”

Dr. Monk: Doctors are trained to be perfectionists. They are expected to answer difficult heath care problems and to know how to heal. Sometimes doctors are also pressured to gain legitimacy by exuding a sense of confidence and certainty when they don’t actually know how to make a patient well.

As we know, the reality is that health care is far from perfect. Medicine is inexact yet doctors face the expectation that they will fully understand the human condition and know all of the complexities about what ails us.  This is an onerous responsibility, and this territory can be ripe for misunderstanding between health care providers and the patient and family members. Doctors may feel that patients haven’t communicated all of their symptoms or followed through on their instructions, and this can leave patients and their families feeling blamed.

For the complete discussion, please go to ProPublica.

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