I hope that anyone who has spent some time reading this blog comes away with an understanding that medical errors can create very deep and painful scars not just for the patient, but also for family members of the patient. In the months after my father’s death I remember spending hours and hours searching the web for any sign that other family members of medical error victims had experienced what I was experiencing: disgust that the medical system would close its eyes to the unnecessary suffering of my father, a sickening sense of betrayal by those with power over patients’s lives, and a deep frustration that my experience and expectations were deemed meaningless each time my words bounced off the fortress guarding the medical system.
I couldn’t believe that other people in this situation would just shrug their shoulders, say “Whatever!”, and go back to their lives.
With all those hours of web searching I did learn that some academic researchers are studying the emotional impacts of medical errors…on clinicians. It was quite a while before I found any resources that said anything about the impact of medical errors on the family members of patients.
I found one non-profit organization, called MITSS (Medically Induced Trauma Support Services), that was formed to “support healing and restore hope to patients, families, and clinicians who have been affected by an adverse medical event.” They define medically-induced trauma as an unexpected outcome that occurs during medical and/or surgical care that affects the emotional well being of the patient, family member, or clinician.
I also found a masters thesis by Sherry L. O. Worsham titled, The Psychological Impact of Medical Error: Symptoms of Trauma in Family Members of the Injured. The purpose of this work was to determine if family members of patients who experienced a harmful medical error have symptoms of trauma, and whether quality disclosure of the error can lessen symptoms of trauma. (She found that 37.5% of respondents reported systems that are associated with trauma, and severity of these symptoms tended to be worse when disclosure was poor or did not occur.) The survey included an open-ended question about how their life has changed since the error. The analysis of these responses begins on page 49. I have copied a number of the participants’ responses below.
My life is empty. My family is shattered. My sister blames my dad and me for not encouraging mom to get a 2nd opinion. I have not talked (nor has my dad) with my sister in the past year…..she left the day after the funeral. (p. 52)
I pity any nurse that has to deal with me medically in a hospital in the future because I will be watching them ever so closely and not trusting them at all. (p 56)
We are trapped in a medical nightmare, all future medical procedures and/or recommendations are weighed by this experience. (p. 53)
I continue to live in fear of the day me or my family ever has to go to a hospital again. I myself haven’t been to a physician since [date removed], I don’t trust anything about the healthcare system and the only way I know to improve it is to continue to tell our story. (p. 56)
My kids have turned into teenagers and I missed it. I became totally absorbed in correcting this failure in our healthcare system. (p. 58)
My life will never be the same. I try to avoid thinking about it but it is still as clear as the day it happened in my memory. I feel traumatized by the mistake and guilty that I should have noticed the mistake. I feel it more acutely because I am a nurse myself and was my [loved one’s] primary care giver. I believe this add[s] to the feelings of guilt. I realize that I should not feel guilty but I am regardless. I find it hard to complete this survey as it has made me think about something very hurtful. My [other family members] are also traumatized by the experience. (p. 61)
I returned from where I had been living to my parent’s house to take care of my disabled [loved one]. In the process giving up my career, friends, etc. to help in the aftermath of my [loved one’s] unexpected death. The excessive stress of that situation combined with my attempt to have accountability for the preventable medical tragedy took a major toll on my health. [It’s] ten years later and I’m still trying to recapture my potential. (p. 64)
I encourage you to read the rest of the analysis of these family members’ descriptions (beginning at page 49 of the thesis). Clearly, these people did not just shrug their shoulders, say “Whatever!”, and go back to their lives. These errors had a tremendous, lasting impact.