Medical error victims grieve differently because a breach of trust has ensued.  There is no book out there to date for bereavement that compares to the exact science of grieving by victims of medical error, nor a specific timeline as it is a "forever" process one has difficulty putting into words because each victim's circumstances are different. It’s not just a matter of grieving the loss of a loved one. It’s about grief in general when a loved one is harmed by medical error, is dismissed and left to pick up the pieces of their lives alone without the support of others who've gone through it because of lack of disclosure, informed consent, accountability, etc., whether that consists of maiming, prescribed the wrong medication or blood, being denied correct treatment or performing what was considered a routine procedure with a positive outcome correctly and the list goes on.  We grieve tremendous loss, period.  Below outlines the grieving process for us who've been harmed in one way or another by medical error.  Explain in detail the process of each phase and how it pertains to you.  Sample responses have been supplied to get you started.  Just replace the content with your own and remove (cut out) content in the areas that you’ve not completed or yet reached.

 Here's my personal experience when it comes to medical error:

 Losing a Child to medical error (replace with your own adverse outcome) - Losing a child is one thing, but when one finds out it could have all been prevented with a simple form of treatment or routine procedure done countless of times with a positive outcome, it's a completely different process and story. Below lists the phases of grieving I went through as a result of medical error:

 Shock and Denial - I knew there was something terribly wrong with my child the minute he arrived in this world and could not believe the hospital would have allowed this to occur.  I trusted them to do what was in my child’s and my best interest when harm ensued.  I sought answers as to why my child was in the condition he was delivered, after I had felt him move inside me only hours before, that prior tests performed had proved he was perfectly fine.  I asked the nurses, other neonatal doctors, even my own doctor in charge of our care at this hospital and not one would give me a direct answer.  All the answers were different.  When my ob/gyn told me, "If you ever get pregnant in the state of Indiana again, I'd rather not sit with you", I definitely knew a problem far greater than what was admitted existed.  Mind you, had he been sitting with me rather than off hospital grounds, this may very well have had a better outcome. 

 I was told by others in the healthcare industry who weren’t in charge of my child's and my care that I'd have to file a claim in a timely manner in order to gain the knowledge I sought.  I was fortunate to find an attorney who was willing to pursue my claim.  I had no idea how hard it was for others in my situation to find that type of assistance until years later when talking with them, so in the meantime, since my son was still alive at the time, I was able to concentrate on how to care for him.  It took every bit of strength I had and more because I was trying to recover from labor and delivery as well.  I had lost quite a bit of blood after my son was born and was on medication that made me puffy all over and the swelling from that made it difficult for me to walk, on top of the radical episiotomy that was performed.  So all in all, I was in a state of physical shock as well as emotional shock and thought it was just a nightmare that I would soon wake from and all would be ok.  Boy was that an understatement!

 Anticipatory grief (in my particular case) - Watching my son suffer before my eyes was even more painful for me than if he had died following his delivery.  The hospital I delivered him at waited 24 hours before they transferred him to the Children's Hospital (which later my perception after reading nurses notes was that they'd hoped he would die there instead of having to transfer him to avoid incrimination and liability).  I knew my son was in worse shape than they let on when the hospital I delivered him at didn't have the facilities to care for him.  All his organs had backed up due to the lack of oxygen in-utero.  He had to be intebated for 20 minutes after his birth until he could breathe on his own and later had to be placed on a ventilator to aid him in breathing while they got his blood pressure and heart rate to calm down.  He started having seizures that the doctors couldn't even identify, so he was placed on several types of seizure medication too.  His kidneys had begun to shut down so they were having to administer meds for that. 

 A month and a ½ later came the news no one parent wants to hear.  After my son had gone through the first bout of meningitis on top of his severe brain damage, the doctors at the Children’s Hospital said that prognosis was not good.  It would take a miracle for him to live more than four months, six at the most, so they requested we sign a DNR letter since we were taking him off hospital grounds and home with us.  They explained that if he would die, it wouldn't be due to his heart giving out alone, but because his brain was slowly deteriorating and not getting the nourishment it needed to survive due to the extensive damage that had occurred...the brain was shrinking.  Already we could see the skull platelets showing through.  Since my son was no longer in need of a ventilator to breathe and the only maintenance required was his feeding tube, we were able to take him home.   But we were unable to keep him home for long the first time – he’d been 2 ½ months old then.  He was back in the hospital 3 days after we brought him home. He had succumbed to a second bout of meningitis.  They finally found the source of where this bout was being contained.  Rather than just in the spine, they found it in the ventricles of his brain that had previously gone undetected, so they had to insert a huge needle after anesthetizing him with a local anesthesia in order to remove the one and a half ounce of fluid that had built up.  More damage was occurring with this bout to a brain that had already been deprived of oxygen during his delivery and subsequently from the first bout of bacterial meningitis that had initially entered through his left ear in the hospital.  After 21 more days in isolation and administering of the required antibiotics, they were able to clear up this bout and we were able to take him home again.  While at home, he somehow contracted RSV pneumonia due to his diminished immune system, so twelve days after he had been home again, we had to take him to another hospital.  This time I took him to a closer one because I had the beginnings of strep-throat at the time and a high fever, so there just was no way I could make it to the Children's hospital by myself as it had been a 45 minute drive from our home as opposed to the ten minute drive to our local hospital.  I didn't even think I could make it to the doctor's office when I noticed Kyle's harsher than usual breathing pattern.  I had to call my husband from the doctor's office to meet us at the hospital. After he arrived, the pediatrician said my husband needed to take me home, away from all the other children, including my own.  It about broke my heart to have to leave Kyle there and be separated from him once more.  But I had to get well so that I could take better care of him with the time remaining that he may or may not have had.  It was little time I had left in which to stay away long, so I was given a high dose of antibiotics, which under other circumstances my doctor would not have advised prescribing.  But under the circumstances in my case, he seemed to think they would help speed my recovery knowing the time constraints I was under.  After spending ten more days in a hospital the doctors requested that we take him home where he was most comfortable as there was nothing more they could do for him.  He passed away quietly in his crib two days later.

 Anguish - The clarity of this didn't transpire until I found out through litigation that the process and end result could have all been prevented had the doctor scheduled a c-section within my ninth month of pregnancy rather than let me overdue another three and a half weeks, even when he had the results from a pelvimetry I’d demanded be taken to ensure I’d have a successful vaginal delivery.   The results from that procedure that had been performed a month prior to his birth clearly showed that my pelvis did not have adequate room to deliver him without harm to him and myself, if the baby were to remain in my uterus for very much longer, which would have raised a red flag to most obstetricians not to let me overdue as I'd previously had with my daughter who'd been taken emergency c-section due to her size.  Performing a V-BAC (vaginal birth after cesarean) clearly states that as one of the proponents a doctor should have prevented from occurring, especially knowing the second child was clearly going to be larger than my previous one was, which earlier tests had revealed he more than likely would be four months before his birth.

 Anger - That came after finding out everything could have been prevented and later left having to find ways of directing this anger in a positive way than taking the law into my own hands. Anger can consume you if you don’t find a positive outlet for it.  I certainly had no desire to spend the rest of my life in prison for something that the doctor and hospital caused in the first place.  

 Losing a child can either make or break a marriage despite medical error being involved, but the one thing my husband and I did was make a pact at the early stage of this journey and that was "They destroyed one precious thing in our lives, let's not let them destroy another" and that was our marriage.  We chose not to play the “blame” game or “what ifs”, but rather what was and where the blame belonged.  I made my husband promise me to never give up on me, which would break my heart all over again. He kept his promise!  Medical error not only impacted my son, husband and myself, but also the family’s structure.  My living child, siblings and parents also suffered, knowing this should never have happened to us with the technology that was currently in place to prevent it.  Just living day to day was difficult for all of us.  Going through the process of litigation for me delayed the grieving process, as it had become a constant reminder of that traumatic day it all ensued and what my husband and I were left with in the aftermath to handle emotionally ourselves.  Not to mention what it took to care for my brain-damaged child up until his death.

Caring for my living daughter was emotionally shattering for me and I had to make sure her needs were taken care of, sometimes I had to place her into the care of others when I was unable to do so myself.  I became somewhat alienated from my family and friends when I hadn’t shown signs of recovering in the timeline they were demanding this to occur.

 My daughter who was three at the time was left wondering what her brother would have been like had he not been born so sick.  Later when she entered her teen years, she blamed my grief over his loss as a reason I did not give her the time she should have gotten with me and used that as emotional blackmail - as reason enough why our relationship was different from other mother-daughter relationships.  In other words, she’d felt feelings of abandonment even when I was there physically.  I’d jotted it down to as a ploy all teens use when they don’t get their way, rather than taking steps to validating those feelings of hers.  But it also urged me to seek counseling for her as opposed to when she was younger.  After several counseling sessions, the psychologist revealed her opinion to be that our daughter was using my grief as an obstacle to getting to know me then, when I was fully functioning both emotionally and mentally, and that only she had the power to change it.  In other words, she was holding a grudge, which the counselor stated would hurt her more in the long run than the one she held the grudge against.  She told us to keep continuing what we were doing – keeping the lines of communication open at all times.  I never stopped.  It is just recently that she has begun to slowly come to terms with her feelings towards me and start anew now rather than try to make up for all those years we lost – during her teen years.  I’m just angry that the reasons she’d used had even perpetuated that cause to come between us, which kept us somewhat at an emotional distance.

 Despair - Came when I could not seek out others having gone through a similar situation as I had (there was no internet communications in place until several years later - 1998) because accountability was non-existent.  Because I was allergic to most prescription drugs, I could not take anything for the depression I found myself having trouble rising above for a good five years.  And counseling wasn't an option for me because once they found out where the depression stemmed, they denied any group therapy outside of prescribing drugs. In other words, they wanted to shut me up.  I was left with nothing but time to get over the rawness of the emotional pain and anger I was inflicted with. The impact of medical error doesn't just involve the victim, but the whole foundation of the family structure is impacted as well, but with my determination and strong faith, we were able to eventually rebuild it to the level it should have been before all that had taken place - not an easy fete whatsoever, but the dynamics by that time were different because we couldn't ever make long-range plans.  We had to live each day anticipating that this could happen again if we went back into the belief that we would be safe in a hospital, but only if we didn't take anything for granted and took matters into our own hands if the situation called for it.  We’ll never trust another physician or hospital that we place our lives with implicitly.  We had to develop our own ways of communicating with them rather than trust them to do what was right when the situation called for it.  I found that it was not uncommon for unsafe medical practices to occur more than once in a family, which is what happened to our family again.  But that time had a positive outcome because of the steps I took to ensure it when my husband was misdiagnosed with a ruptured appendix, even when his results proved otherwise. We'd gone directly to the hospital when the onset occurred but they'd released him per bedside doctor's orders with a diagnosis of adonitis and a prescription for cramping.  A test hadn't been performed until eight days later that showed a huge mass in his abdomen.  They had to then perform exploratory surgery to find out what it could be. The result was a ruptured appendix as we’d earlier surmised.  I'd read up on what an appendectomy required and when I saw that my husband didn't have drainage tubes in place as was the norm whenever infection is present, I decided to give the doctor and staff the silent treatment as had become the norm in our family by calling in an outside specialist who facilitated in my husband getting a second surgery to put them into place or the result would be death.  The surgeon was not happy at all about my silent intervention. Isn't that a pity! The specialist also made sure he was present during the surgery so no further harm would come to my husband as the angry doctor could very well have proceeded in doing.   

Resolution - No amount of money can compensate for the loss of a life.  And in Indiana, with a cap placed on malpractice cases, the amount they suggested was like a slap in the face, especially when it would not result in preventing the doctor from harming again. When I'd first asked the attorneys if my claim would ensure this, their response was, "We're not here to put a doctor out of practice.  We're here to compensate you for your loss!" Some compensation!  Resolution never came in preventing another death at the hands of both this doctor and hospital until 1998, when the doctor’s hospital priviledges were revoked, but he could still practice gynecology in his clinic, although he had to refer his patients to other specialists when the need called for it.  By the year 2000, though, even with all the claims this doctor had against him, the state remained ignorant of this doctor's negligence and allowed him to slip through the cracks of the system – the doctor had supplied false evidence on his renewal applications.  It wasn't until one of his last victims pursued doing an article with Forbes Magazine that the state took action against him. The result was revocation of his license.  As the saying goes, "what goes around, comes around". Just in my case the journey took longer than anticipated. My heart went/goes out to all those mothers, babies and women who'd been harmed throughout all those years following my son's death, some we're not aware of because no claims had ever been filed and that was the only measure of statistics lawyers could go by.

 Closure - This came when the doctor's license was revoked in February, 2000, ten years after I'd filed my claim, four years after out-of-court settlement of my claim commenced after having gone through two appellate courts and then the state supreme court in my favor. I never went into litigation for the money, just answers to so many questions that the doctors and hospital refused to answer or gave round-about answers that didn't fit the situation at all. I went into it wanting to stop him from harming another woman and child.

By Joni Anderson
PULSE of Delmarva
copyright 2001