Wednesday afternoon, before we left for Delaware, we attended a “Disclosure Meeting” regarding my mother’s death.
I had had questions about my mother’s treatment in the time she was in the hospital before she died. I had written to her cardiologist, who called me and also set up this meeting. I wasn’t looking to blame anyone and I wasn’t hoping to obtain “ammunition” against anyone. I just needed a few answers for my own understanding and peace of mind.
My mom died Jan 27th – the meeting was April 30th. That gave me time to deal with some of the emotions and the doctors time to review all the medical records. My husband and I went to the meeting. Around the table, in addition to us, were my mother’s cardiologist, the hospital cardiologist, the director of medicine, a social services staff member and an attorney.
The hospital has instituted these meetings to respond to questions and complaints regarding medical care. But more on that in a bit.
Both my mother and her mother had aortic stenosis (aortic valve problems) and both died from congestive heart failure as a result, even though my mother had valve replacement surgery 5 years before she died and my grandmother did not. The downward spiral at the end of their lives was eerily similar. I wanted to know if there was something we – myself, my children and my sister – should be concerned about. According to the cardiologists, we should have an echocardiogram soon to rule out a bi-cuspid aortic valve, which tends to result in aortic stenosis earlier in life than does the more typical tri-cuspid valve. (That means 2 flaps or 3 flaps on the aorta, the valve through which the blood flows from the heart to the rest of the body.) That was helpful information.
I told them that, while my mother may have been aware of how serious her condition was at the time she was admitted or in the next couple of days before she died, the family was not adequately informed regarding how grave her condition was. I also learned, through discussion with the doctors, that although they can’t be 100% accurate regarding the “manner of death” because there was no autopsy (not my idea!), they can make educated deductions based on the data they do have (test results, monitor output, nurses’ notes). Based on all of the information available, they felt that my mother suffered sudden cardiac death – that is her heart just got too tired and stopped. It was not a “heart attack” or stroke.
My mother had scleraderma as well as heart disease, which muddies the waters even more and makes me wish to God the rest of the family had agreed to an autopsy. Then we could have known whether the replacement valve failed after only 5 years because of a flaw in it or because scleraderma had a negative effect on it somehow. It could have helped other patients with scleraderma make decisions and helped doctors make even better choices for heart patients with scleraderma.
We left satisfied that our questions had been answered. I was also kind of amused at the size and make-up of the meeting group. Talk about overkill and being sure to protect their collective medical behinds!! Since my husband and I are not intimidated either by medical professionals (I’ve worked as a med tech and childbirth instructor with a good understanding of the human body) or by attorneys (both my husband and I have worked in insurance claims where we’ve met our share of lawyers of all ilks), we were not intimidated to sit in this conference room with all these people. However, I can see how many people, especially after a death or adverse medical outcome, would be intimidated. I wondered if that was part of the intent. Kill the folks with kindness but also display all their fire power.
The funny thing is that, in dealing with us, it was a waste of their money. They paid 5 individuals to sit for an hour when one doctor could have answered our questions in half that time. But I understand it from the medical establishment’s point of view. I’ve seen it when I handled claims – someone always looking to blame someone else for what could not be avoided, expecting doctors to be able to do the same miracles as God. I know that doctors are not omniscient, nor are they more than human. None of us is perfect. All I want is for them to be able to admit there’s been a mistake made. But in this society that is so anxious to blame and seek to punish (through civil litigation, if nothing else), it has come to this need for doctors to protect themselves at all costs.
It’s truly sad, what this world has come to. No one can admit they’ve made a mistake. People look to see who they can blame. It’s never “my fault.” It’s always “She made me do it.” Or “He did it first.” Or “I did it because everyone else does it.” It truly makes my day when someone can say, “Oh my God, I’m sorry. I really screwed up. I didn’t mean to cause this harm. What can I do to help repair the damage?”
I suppose I shouldn’t be surprised that things are like they are – after all, it was that was with Adam and Eve, wasn’t it? I guess I’m sad that, after all this time, humans still haven’t learned.
After the meeting, we left for Fishkill, NY. My husband, as thoughtful as ever, had thought that 3 hours of driving would be enough after the meeting, since it didn’t start until 3 PM. It is was good, restful night at the Hilton Garden Inn. The rest of the drive to Delaware would be done the next day.