Kaiser Permanente Medical vs. Melva Jeanne Barkley - a descent into Hell Kaiser killed my wife, Melva Jeanne Barkley, Kaiser #0057339. This is an indictment of Kaiser's Morse Avenue facility, recently subject of several unfavorable news stories, as well as an indictment of me. When she needed me the most, I failed her. I could not cut through the excuses, the bureaucracy, the split in jurisdictions, the avoided communications. To break through the communication barriers, every escalation had to be a major one leaving no chance for the minor ones to ever get addressed, and the major ones took 4 to 5 days each, which meant Jeanne just ran out of time, the time stolen by Kaiser one day, one week at a time. Kaiser killed her. I failed her. The anguish is unbearable. The days pass by. I can work which takes my mind off things, I'm eating, I take care of winding down the details of her life, but I cannot sleep more than a few hours. The tears just do not stop. I lay in the darkness watching but not seeing, with the images of what Kaiser did to Jeanne flooding past. It is a Hell I deserve. The wrong one died. --Michael James Barkley, 6/25/06 - - - - - - - - TIME LINE/NARRATIVE [pending] THEIR MISTAKES ( in somewhat descending order) --Failure to Communicate: Dr. Mahavni's pattern of ignoring phone calls from me (husband, at least 2 calls), sister (at least 2) and ignoring chart correspondence (tried in desperation, 4 or 5), meant that we had no way to escalate problems and that the family conferences his sister and brother-in-law wanted never happened. Those problems he did address from us he did so in such a delayed manner (5 days, 7 days, 2 weeks?) meant that only major problems could get handled, if then. As we went from problem to problem to try and sort out why Jeanne was not improving, was becoming more distant, was losing hope, instead of solving problems in a timely manner, it added weeks to the process of ruling out these other areas and learning the real culprit was an escalating adverse reaction to Dilaudid. His delays meant Jeanne just flat ran out of time. His policy of only accepting inquiries from the husband, proved fatal. --Failure to recognize how narrow the window was for Jeanne to get her life-support meds reinstated and assist her in nutrition in every way possible starting from 5/29. Instead, Dr. Mahavni just wrote her off as she failed to make benchmarks only he knew. Even a few days' delay would have damaged her. As it was, the delay in her remedication was fatal. --Failure to supervise: Failure of Kaiser to realize that their surgeon was not equipped to follow post-operative care for a case this complex, that it would have been better to have a nurse or a social worker follow it daily and report back to him of any changes or complications, that 9 or 10 bed changes in 30 days meant no staff was fully familiar with her condition and that appalling deteriorations in her condition were accepted by receiving wards as her natural state. This failure to supervise was fatal. --Failure to recognize and handle reaction to Dilaudid: Jeanne's adverse reaction to Dilaudid climaxed on 6/18 when Jeanne was lost in a world of stark terror ("help me, help me, no, no, no, oh God, oh God") and delusional loud responses to conversations with people not there. It went on all day and into the evening. Her brother reports it was going on the 5 hours he was there earlier, and by the time I got there her voice was loud, raspy, throaty, and the effort was causing her obvious breathing distress. Does this stress an embolism? The Cardiac Ward handled it by closing the door to her room and taking away her call button. I asked for a pain med pump for her, which they reluctantly brought. By then she was so far gone I had to remind her it was there and remind her how to use it and touching the hand to tell her which one held the button. I mentioned the delusional conversations to nurse Sharon who responded that was common with Dilaudid - this is outrageous: Jeanne tolerated MS-Contin well, had been on it for 18 months, and instead she'd been on a drug that drove her into terror and delusion and left her unable to cooperate in her own care. Cardiac ultimately shipped her down to G8 in Camellia because her screaming was disrupting other Cardiac ward patients. On 6/17 Jeanne had frantically complained of pain in her belly, but later that afternoon it suddenly switched to her shoulder, causing a flurry of activity over 24 hours by staff to identify the source of it. During that time of her frantic complaints, I asked her to raise her right hand, and then her left (among other tests), and she said she couldn't figure out which one was which. Dilaudid left Jeanne unable to participate in identifying symptoms OR their locations. Staff doctors ignored a proven pain-fighter for her in favor of one that killed her. --Failure to attach to pulmonary monitor: Staff knew she was fighting an embolism. On 6/25 they moved her to G8 without a monitor, out of direct sight, down at the end of a hall, they turned on music on the TV and took away her call button, and they left her there to die. This one neglect, failure to monitor, killed her. This is negligent homicide. Had I not been there, she would have been dead for hours by the time they found her. Even so, my ignorance of the symptoms of progression of death meant I did not know to get her help early enough in her need for it. I failed her. --Failure to heed call regarding apnea: As Jeanne's breaths were getting less frequent on 6/21 I became concerned, went to the nurse's station, and told her nurse that Jeanne was forgetting to breathe. The nurse said it was OK, they were monitoring her. Upon returning I saw Jeanne breathe her last and begin to turn gray. Again I went to the nurse's station and told them "She's forgetting to breathe, she's not breathing" and this time a different nurse came, took one look at her, and started the "code blue". Delay upon delay upon delay. Code Blue staff eventually got her heart restarted, but opined that her brain had been without oxygen for 15 minutes. My own suspicion after watching the final withdrawal of care on 6/24 is that it was more like 30 minutes starting the moment after the last nurse's check of vital signs (or maybe even before). --Failure to stabilize pain: Kaiser plasters the hospital with patient rights posters proclaiming the patient's right to be free of pain. The entire time Jeanne was there she was alternating between days of unbearable pain and days of somnolence, with only a few when she was actually lucid, calm, and pain free. This alone took away from her any ability to cooperate in her recovery. Her pain was never properly managed, and could have been with a drug she was known to tolerate well, MS-Contin in various strengths. All by itself, this killed her. --Cold turkey on tremor medicine: Towards the middle of the first week, the effect of removing her "cold turkey" from her tremor control, Neurontin, meant she could not speak, chew, swallow, or use either hand. This took away from her any ability to cooperate in her recovery during that time. It took days to get the Neurontin restarted, and of course days for the effect to build back up. --Failure to feed her: Towards the end she went two weeks without significant nutrition. Befuddled by pain and Dilaudid, she became less and less able to accept food, no effort was made to feed her again by IV until I demanded it (for several days) as a last meal the day before she was removed from life support, no effort was made to feed her by feeding tube except that a tube was installed late on 6/21 - the feeding tube was never used, X-ray was required to ensure it was correctly place, and shortly after the X-ray her "code blue" occurred. I made efforts to feed her every evening I was there (and I was there 2 to 4 hours every evening) - sometimes there was food available, sometimes the staff had already cleared and discarded it in frustration. Jeanne's sister-in-law and sister also attempted to feed her when they visited, with more success than I. My sister was turned away by staff the two times she came to feed Jeanne. We don't know how much or how little staff fed her. Jeanne needed help eating for most of the past year, having become unable to hold utensils, and of course continuing to have difficulty swallowing requiring her to be very fussy in choosing what foods to eat since many foods would just lodge in her esophagus and not move up or down. Kaiser starved her. In a phone call from Dr. Mahavni that he made to me on 6/21, after Dr. Patel got on him because I'd gotten on Dr. Patel, I told Dr. Mahavni Kaiser had been starving Jeanne for 2 weeks and they needed to feed her. He said they are a hospital, they don't have time to feed every patient. I told him I was quite able to hire someone to come in and feed her. He said it wouldn't do any good for her long-term prognosis. What? So you just starve her? This is so outrageous. It was one excuse after another for his behavior, and the excuses continue. They had the ability to save Jeanne, but instead they excused her to death. --Refusal to allow outside food: Aware of Jeanne's swallowing problems with many foods, and her repulsion (and nausea in the case of the pureed foods) to most of the food offered at Morse Ave., I asked staff if I could bring her a piece of cheesecake the day after our anniversary. They checked the chart and said OK. I went and got a piece from the Cheesecake Factory. Jeanne ate it voraciously, in a manner she did not demonstrate towards any Morse Ave. food. The next day I was chewed out by the nurse and told not to do that again since they were monitoring her blood sugar, etc. I essence, they wouldn't feed her, and they wouldn't let me feed her. --Forgetting to maintain bowel regimen: having finally cleared the impaction she had upon admission 1-1/2 to 2 weeks later, staff began a bowel regimen, and then a few days later forgot it to the point that when I asked on 6/17 when the last time was she'd had a bowel movement they had to go look it up and tell me it was a week. It again took several days to restart. --Cold turkey on prozac: Restarted the 6th, the late restart diminished her ability to cooperate in her own recovery. --Cold turkey on zantac: Never restarted, this dimished what swallowing ability she had left. --Failure to set nutrition benchmarks: Rather than set specific nutrition benchmarks for Jeanne and her family to work towards, Dr. Mahavni wrote Jeanne off early in the hospital stay because of her disabilities, cheating her of the chance to live and work towards eligibility for chemo. He did not tell me until he did so by phone 6/21 that they did not consider her a good risk for chemo because of her long-term poor nutrition, and that without chemo the cancer would come back and she would die. He had written her off without telling us, and gave us no chance to make the effort. Her nutrition was actually quite adequate in the years leading up to the surgery, but the tumors had been robbing it and depleting the surrounding tissues making it appear that nutrition had been poor. Until ICU withdrew TPN IV feeding, her albumin scores rose from 1.5 up to 2.8 and she was making good progress. By writing her off instead of presenting a care plan for nutrition, Dr. Mahavni cheated us of the opportunity to continue that progress. Is it proper to tell a disabled person that they will be denied life-saving medical attention because of their disability? --Failure to adopt a care plan: During most of the days leading up the the code blue of 6/21 Jeanne's brother-in-law, a cath nurse at Valley in Pleasanton, was urging me to demand a family conference and to require a written care plan from Dr. Mahavni. In response to his pressure, correct pressure in retrospect, I sent via the chart a written request to Dr. Mahavni for such a plan on 6/19 (he wasn't responding to phone calls), listing the areas of concern. Dr. Mahavni never replied. The absence of such a care plan doomed Jeanne. --Failure to maintain memory of urine management instructions: Jeanne had a supra-pubic catheter installed in April 2005 because she was popping 30-cc foley bulbs out her urethra, the muscles were so unusable because of her MS. This meant that with the least obstruction in the SP catheter, urine would flow out her urethra and she would be sitting in it. I had to remind them over and over, day after day of this and when they'd asserted on the final morning, 6/24, that her kidneys had stopped producing urine, again I had to direct them where to look. It meant that she had regularly been sitting in her own urine. Bed sores that were improving on the way in turned to vicious flesh-eating craters in the bath of urine. Staff couldn't remember the simple stuff, couldn't remember the major stuff, was unable to care for Jeanne in the ways she needed. --Marking chart DNR: The evening of Jeanne's first return to the ICU, the doctor on call came in to verify to our horror that her chart had been marked "Do Not Resuscitate". We relayed Jeanne's directive that she wanted full resuscitation unless her brain was gone. Apparently Dr. Kinney, on his own initiative had changed Jeanne's instruction to DNR. He has not acknowledged his culpability, while not denying it. --Direction of resources towards embolism: In the middle of the first (second?) week as they were attempting to wean her off oxygen, they found that each effort to do so would drop her oxygen scores from the 90s down into the 80s. They ran another CAT scan, determined she had an embolism in her right lung, and began an agressive regimen of blood thinners to eliminate it. Based on her oxygen scores over the month prior to surgery compared to the year before that I suspect the embolism had been there since April and she was doing OK with it. If it wasn't an urgent matter, their focus on it to the exclusion of her other life maintenance needs meant the entire recovery process would fail. --Failure to protect her false teeth: Jeanne was in 9 different beds at Morse Ave. For each move I safeguarded her teeth in her blue cleaning box upon which I had place labels with her name and address. During her times in and out of hospitals she'd always been worried they would loose her teeth. During the code blue, I was shoved out of the room, and then the nurse removed her upper plate (I had her lower), placed it in a cup on the bedside table, and went with the gurney and the CNA to ICU. I went through the room collecting her personal property and took it with me. I missed the teeth because I had no clue they'd been removed When the nurse returned 10 minutes later she found the room had been stripped out and no teeth. When I got to ICU I was left out in the hallway while they stabilized Jeanne, and never did get to see her again Wednesday night. Thursday I realized her teeth were gone, a phone call to G-section produced no results, and when I got down there they searched everywhere and concluded Cliff had thrown them in the garbage despite his off-handed comments that he hadn't. Unlike other failures, this one was not fatal, but it was the ultimate insult. MY MISTAKES --Failure to Work the System: I couldn't figure out how to get problems solved in a timely manner, and by the time I realized she'd run out of time it was too late. Jeanne begged me to help get her pain medicine stabilized, and every time I thought I had it twisted out again. My inability to make the Kaiser system work for her killed her. I should burn in Hell for failing Jeanne when she needed me most. --Failure to recognize death as it was happening: My failure to understand her open-eyed blink-less stare during sleep 15 minutes before she stopped breathing on 6/21 meant I missed the chance to help her at onset of the loss of brain function. Staff ignored the symptoms. I failed her. RECOMMENDATIONS 1) This clearly did not work. Kaiser should change the way it handles hospital stays for complex cases. Having a surgeon manage her post-operative care is wasteful of the surgeon's valuable time, and in this case was deadly for his patient. For a case as complex as Jeanne's (Asthma, Multiple Sclerosis with a dozen subcategories of problems, ovarian cancer) a skilled professional such as a nurse or social worker should be assigned to her case from admission through discharge. Admittees should be evaluated to discern whether there is worrisome complexity, any professional staff member should be authorized to nominate a patient to that higher level of attention, and then if admitted to be such, the assigned specialist should: --meet with the patient, family, and caregivers in advance, --record for all prescriptions the risk of suspending them and urgency in renstating them, --record for all non-prescription supplements what they are and why being taken --record dietary and swallowing problems, and why, and what is being done to cope with them --record all other such problems, such as bowel, bladder, bedsore, cognition, internal temperature variants, external temperature tolerance, infectious history, motor skill problems, feeding needs, and any more that are relevant, plus what is being done to cope with them. --record what activities bring the patient joy, interest, satisfaction --draft a door-to-door care plan, and get sign-off with patient, family, caregivers, and doctors To ensure plan is being met --monitor chart daily --visit patient daily --talk with visitors daily --be open to receiving escalations from any of these --record and resolve complaints --the specialist should have the right to escalate gaps in plan execution in minutes, not the days that it takes a doctor or surgeon to get around to handling things Depending on how much is left after estate & inheritance taxes, I would be willing to make a substantial and annual donation in Jeanne's name to assist in getting such a complex case program started. 2) Don't EVER place a person with heart or pulmonary problems in a location that cannot be watched, and don't EVER leave them without electronic monitoring. 3) Do not ignore calls and correspondence from family members, not EVER. 4) Do not withhold vital medical care from disabled people on account of their disability. 5) Losses of false teeth are legendary. Why? There is no excuse. Whoever removes them in a code blue should put them in their pocket and personally hand them to a responsible family member, with zero tolerance for losses. = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = Instructions included with autopsy forms submitted to the Coroner, 6/27/06. Much of this they will be unable to do anything with, but I wanted them to have the questions in mind. - - - - Death of Melva Jeanne Barkley, Kaiser Member #0057339 First death 6/21/06, second death 6/24/06 Autopsy/Medical Record & Related Inquiry [Code Blue event record separate from regular medical record?] --Criminal culpability? --why no heart or breathing monitor on someone being treated for a pulmonary embolism? --look at previous cat scans to see if embolism was there at that time & missed --charted nutrition (meals & IV), dates, times, amounts since 5/25 --albumen scores over past 3 months. --Oxygen scores over the past 18 months --Dates & dosages of dilaudid administered --Dilaudid side-effect report to drug manufacturer --Dilaudid took away her ability to participate in her recovery, as did tremors (Neurontin suspension), depression (Prozac suspension), Zantac suspension, inadequate diet offered to her, supplemental IV feeding withheld. . . --cancer spread? --MS spread? --what happened? will an autopsy show? - - - Autopsy: --initial code blue, why? --shock? why? blood pressure problems, why? --state of MS lesions --cancer metastasised? --details on embolism(s)? --any embolisms in the brain? --toxins, infections, --nutrition deficit - effect of no nutrition for two weeks before blood pressure collapse --pancreas --bowel fail? impaction cause damage? --surgery fail? reason for swelling of tummy 6/21? --6/21 feeding tube insertion puncture the lung? --6/21 loss of blink reflex 15 minutes before breathing stopped, just after last nurse's check of vital signs, 20 minutes after X-ray of feeding tube - significance? --anything that will exculpate Kaiser --accidental death? --elder abuse? withholding of medical care from a disabled person because of that person's disability? negligent homicide? = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = One issue not yet pointed out to the coroner is that she crashed shortly after a blood transfusion. Or at least one was authorized. Did it happen? = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = 10/27/06: Long after I believed that nothing else could have gone wrong at Kaiser, I received the AUTOPSY in the mail from the Sacramento County Coroner. You see, Kaiser was going to do the autopsy but when I went to sign the forms it was obvious there was a cover-up afoot and the "Decedent Services" people jerked me around all afternoon, first saying they couldn't find the paperwork and I'd have to wait until they got out of a meeting, then saying that if I wanted to ask questions I'd have to pay for the autopsy (which I agreed to), and then that I'd have to have it done somewhere else, and no, they didn't know where the coroner's office was, etc. So I did. $2,212.00 worth. The results from the coroner are radically different from the gloss shown on the death certificate and on Kaiser's autopsy form. The coroner made it clear to me that they do not change cause of death on the death certificate. Keeping that in mind, while the certificate listed "Sepsis" as the immediate cause, with Pulmonary Emboli and Ovarian Cancer as the underlying cause and Multiple Sclerosis as contributing condition, I suspect that if the coroner had issued the certificate it would have been "Sepsis" resulting from acute peritonitis, in turn resulting from the perforated duodenal ulcer. Yes, the cancer had spread, but no, that's not what she died from. She was in that hospital from May 26 through June 24, and nobody noticed a perforated duodenal ulcer. She died with 2.8 liters of pus and food particles in her abdomen outside the intestine, but nobody noticed. She had at least 3 torso cat scans and two torso X-rays between May 3 and June 21 but nobody noticed the perforated ulcer, even though various sites on the internet say that's how you find them. Morse is identified by Kaiser as a "teaching hospital" - one wonders what they teach there. I'd also like to know who whacked her in the head, but I guess I will never know that either. I'm so very very sorry Jeanne, I let you down when you needed me the most. = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = =