NARRATIVES
TALK TO A
ADVICE
9 March 1997
I guess I'm looking for some reactions, opinions, perspectives, etc. I do know that my family and I feel very much in the dark.
My mom had a ruptured aneurysm almost five months ago. She is still alive and I'm leaning toward the belief that it would have been better had she not beaten the odds and had died before making it to the hospital.
Here's my story...
On November 2, 1996, 2:00 am, in Southern California, my mom suffered a ruptured aneurysm deep in her brain (the doctors said it was in the area that affects memory, speech, personality). She had just turned 69 years old two weeks earlier.
We (my dad, brothers and I) then entered the world of specialized doctors. Within one week, we talked to several neurologists, several anesthesiologists, and several neurosurgeons. The strange part was that they all told us something a little different about her situation. The stranger part is that my dad literally had to chase down all of them in order to just get information. When he was successful in catching the doctors who seemed the most tuned in to my mom's case, he learned that the medical consensus was that she was going to die in a few days.
We had about four days during which we were able to communicate with her. In between periods of vasospasms and sleep, she kept us entertained with her sense of humor. The doctors were very surprised with her degree of consciousness. Then she slipped into a deep coma which was what they expected. They gave her 2-24 hours to live. The next day she came out of the coma and a different doctor said not to give up. Then another doctor recommended that she be shipped to USC immediately where his doctor friends could perform a surgery repair. We decided to wait for the main neurosurgeon to return from vacation to get his opinion. And, another standby surgeon thought that was a good idea so we waited. When the main surgeon returned he said her brain might get healthy enough to have surgery in 2-3 weeks. We said OK and hunkered down for this new waiting period. During this time she stayed mostly unconscious but did have short periods of responsiveness.
She had a successful aneurysm clipping done on the day before Thanksgiving. On Thanksgiving they had to open up her head again to remove some blood clotting which they said was not uncommon.
For the next month she remained mostly unconscious due to the double dose of anesthesia, they said. She also experienced severe head swelling and a shunt was considered. Her swelling finally went down so the shunt was nixed. The doctor(s) told us she was slowly getting better and that it would be wise to transfer her to a "long term intensive care hospital" where her recovery would continue. She was on life support.
A representative (recruiter?) from this new hospital showed up to evaluate her. One of her original doctors met with my dad and told him she could probably be moved in a week. My dad went to work and then got a call that she was in an ambulance on her way to the new hospital. He rushed but she beat him there. She was successfully "placed" in this new hospital on the day after Christmas, about five days sooner than what we were told was going to occur. Now, in our opinion, this is when things began to turn really weird...
My dad felt good about this new hospital. The recruiter was very friendly and the hospital brochure said all the right things, including emphasizing a "Patient care Conference" that takes place every two weeks. At this conference, the brochure said that my mom's case would be discussed by her team of care providers. Goals would be made and treatment would be planned. And... the family would be ENCOURAGED to participate in these conferences. Finally, we figured we would be kept in the loop of information about her condition!
A month went by and my dad visited her everyday. Still, no real responsiveness. She developed a fever which she was treated for. I kept asking my dad when the Patient Care Conference was going to be and all he could say was that he hadn't yet been notified about it although he had made inquiries. He had been able to talk to several different "body part" doctors, however. One doctor had such a strong non-English accent my dad couldn't decipher much. One day, during my dad's visit, a nurse mentioned to him that my mom had had no brain activity for a while. My dad was unprepared for this news. As far as he knew, she had left the original hospital on the mend, as slow as it may have been. Why had he not been notified of this status change? The nurse gave him a doctor's number to call for more information. The doctor confirmed that she was in a "vegetative" state and had absolutely no chance for recovery.
My dad and brothers traded phone calls with the hospital's social worker (she) for a week before a meeting could be set up to discuss "what now?" My brothers and dad rearranged there schedules, took time off from work, and drove from distance of over 70 miles for the meeting that would include them, the social worker, and a doctor. My family and the doctor waited 30 minutes for the social worker to arrive late from a lunch engagement (I live 1,000 miles away so I waited on a conference call phone line). The doctor had to leave so the social worker facilitated the meeting. She confirmed that my mom was vegetative. When questioned about when this new brain state had begun she couldn't answer. When asked about the supposedly four Patient Care Conferences that had been conducted during the past 8 weeks (it was now mid-February) at which family members were encouraged to attend, she responded by saying that the hospital and doctors were very busy and that the conferences were not for family members anyway.
She told us we could now make decisions regarding disconnecting my mom from life support. She explained what our options were and how the process works with the hospital's ethics committee review. Privately, my family and I had already discussed this in depth so we were prepared to give the social worker our answer right then. We told her to disconnect the ventilator, discontinue antibiotics and medications, and to change to a "no code" status. She said that was fine but that we would have to meet with her and a doctor again in a week to make the final decision. We didn't like that idea, but agreed to it.
A week later the same kind of meeting was arranged. My family went through the same logistical challenges of changing work schedules and driving long distances and I got on the conference phone. My brothers and dad showed up at her office and waited. Thirty minutes later she showed up acting surprised that they were there. She claimed that she had called everyone earlier in the day to cancel the meeting since the doctor was too busy to meet. No one had received any call. Since I was waiting on the phone, she conducted the meeting anyway. We reaffirmed our wishes and assumed that my dad would sign the official papers right then. The social worker said he would have to come back in several days to sign the papers because they weren't prepared yet. We also asked her to have another EEG performed and she agreed. She also agreed that we could have my mom's complete medical file after she dies.
Several days later, my dad talked to the doctor about the EEG. Vegetative was still the status quo so my dad went to the hospital again to sign the papers. The papers were signed and then, we were told, sent on for more doctor signatures and then to the ethics committee.
A few more days passed, and my dad received a call from the social worker. She said one of the doctors refused to sign the disconnect order because my mom was showing signs of breathing on her own. Ventilator weaning had begun and they didn't want to just stop it because she might die. Might die? Wasn't that the point?
My dad was told to just put everything on hold until the weaning was complete. During this period she also developed an infection called MSRA (?) and was placed in isolation.
In early March, my dad met with the social worker again and authorized something which changed her code status. I'm not even sure if anything ever made it to the ethics committee.
So now... here we are. It is March 9th, 1997. My mom is in a vegetative state with no chance of recovery and is breathing on her own. And I must admit, due to lack of information, we have begun to fill in the gaps with worst case scenarios, including Medicare fraud on the part of the hospital which has been receiving reimbursement form Medicare for my mom since December 26, 1996. Here are the facts:
She was placed in the hospital about a
week sooner than her original doctors told us would be appropriate.
We believe the recruiter did her job well.
She has been kept alive much longer than necessary due to
disorganization, non-communication, and "ethical" considerations on
the part of the hospital. We believe the hospital is very good at
drawing things out as long as possible in the name of "doing the
right thing". Our next disconnect decision, if we have to make one,
will include stopping food and water. I can just imagine how long
that would take!
If the hospital's goal is to maximize my mom's length-of-stay, to receive the most reimbursement days from Medicare, then it is truly achieving its goal.
We have made initial contact with the Medicare fraud officials and have provided some preliminary information to them. However, unless we are on to something that will benefit others in the future, we don't see any real value in channeling our energies this way.
Anyone have any opinions, perspective, wisdom?
Are we just encountering first hand an unfortunate aspect of the current health care system? Is it something we should accept and move on? Or, is this a problem that needs to be fixed?
By the way, I have personally found the aneurysm support home page to be the most valuable resource I've tapped into since that life changing day, November 2, 1996.
Thanks for listening.
Update: 21 Jan 2003
Well, it's now six years later, January 2003. My mom lives in a 24 hour care nursing facility. It's nice place, but it still has all the odors, sights and sounds I associate with fears I had as a kid when we used to visit my grandfather in a place like it. And now, my mom is in one of those places. It's a weird irony, but that's reality I guess. She's immobile, incontinent, basically speechless (about 3 words per month), and does a lot of staring. May dad eats dinner with her every night. Even though she can feed herself, my dad still feeds her on occasion. Her care is covered a bunch by Medi-Cal (CA Medicaid). Medicare ran out a long time ago. My dad had to hire a lawyer and dissolve assets in order to arrange for the medical coverage. Overall, my mom and dad are in a new groove. He's a retired art teacher and now works full-time as a mall cop. My mom was an elementary educator and is now a resident of this place. They see each other every day.
The rest of the world goes on. I turned 50, my kids began college, one of my brothers got a divorce, another brother got married, and still another brother has yet to seek treatment for alcoholism. I mention all this because it's also a part of this story about my mom. All of us knew her as she was before 11/2/96...a vivacious, fun and caring person. As I reflect over my life as an adult I realize now that she was the force that worked to keep everyone connected. Of course, she's 100% different now. I am sure each of us (her 4 sons) has a unique relationship with her, just as we all did before the event. It sounds cold to say this, but for me, I hope she is in her own world and is not cognizant of "what was." It's the only way I can cope. My relationship with her symbolizes everything I can't control and everything that doesn't make sense to me. This is my honest reaction today, 1-20-03. Might be part of my my mid-life crisis?
I live 1,000 miles away from her. I see her about 2 times a year. Each time I visit, I am scared and overwhelmed by emotion. Anger and sadness. Bummer. But I love her in spite of who or what she is now. Always will.
One thing I became aware of throughout all this is that any "issues" one has with relatives become a very awkward thing when the relative takes a serious nose dive like my mom did. Unfinished business...unresolved problems...whatever you call it...they become tougher deals to handle when the "other person" is totally spaced out. I've shared intimate thoughts with her as she just lays there. Some aren't that pretty. BUT, forgiveness is the bottom line. And yes, forgiveness and love can still happen in a one-sided relationship between a mother and son.
So anyway, thanks for listening once again. I hope this addition to my narrative can connect with someone out there. Life continues to go on. It's quite different from what I had anticipated it would be. I hadn't planned on being a "student of life" at this stage. I feel like "Mr. Self-Help" at times. The learning curve is steep and long.
Update: 19 July 2007
Ten years ago my mom had her aneurysm episode. Wow, life is so unpredictable. Here's an update:
My youngest brother, Gary (the alcoholic) died close to Mother's Day on May, 2006. I went on an emergency trip to CA to see him. His partner, Mike, had called my dad -- Gary was in the hospital with liver failure. The next day I was turning fifty-freakin-five on May 12. I hung out with Gary in the ER and chatted with him till midnight. He told me alcohol was getting the best of him. The next night I stayed with him until 1am, then I went to my dad's house to catch some Z's. The next morning, the hospital called my dad and said Gary had croaked. Howard and I went to the funeral home and hospital to deal with everything. While this was going on, my mom (Pat, the aneurysm patient) laid in the 24 hour care place 10 miles away and cruised on with life -- oblivious to what was going on with her sons.
Gary's going-away-party was cool -- just wanted y'all to know that. I got reconnected with an old family friend who does costumes for big screen movies and learned that he had a couple movies to do until he retired. He had just finished doing Miami Vice. Also met all kinds of Gary's friends. I loved that. What was also even more cool was to watch the DVD that Gary's friends had made of his life. I couldn't stop crying, didn't want to.
I still play in a rock cover band and we are now going through our own transitions. I left my job in state government a year ago after 19 years and now work for the private sector. Why can't life be stable???
Presently, my mom is in her 24 hour care place still. My dad just turned 80 and he and Pat celebrated 60 years of marriage. Howard still works full time as a mall cop (38 years before as a high school art teacher). My bothers -- Mark and Steve -- recently met me in So, Calif and took Howard to a Dodger game for Fathers' Day and for his birthday. And I reconnected with an old friend of mine. We had first met in 1973.
Of course, my brothers and I still act silly when we are together. When we entered my mom's room on Mother's Day 2006, we were being goofy. She asked Howard, "Who are these these clowns?". We laughed a lot about that. :o).
What's the moral of this story? Not sure. Just LAUGH A LOT. And stay connected to this website. That helps me.
Discussion, comments, or questions: Doug Spohn
© Copyright 1997 Doug Spohn
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