These are personal experiences I have had involving my sons’ care at the University of Michigan hospital in Ann Arbor. To be sure, my sons have received outstanding and sometimes life-saving care through Michigan Medicine, but in a large institutional setting like the University of Michigan Hospital, there are pitfalls and gaps in care that can make a visit to the ER or hospitalization excruciating for patients and their families. Improvements in care rely on acknowledging the flaws as well as successes in treating patients, especially those with extraordinary medical needs.
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The COVID pandemic has affected routine medical care, especially at an institution as large as the University of Michigan’s Michigan Medicine, in almost every aspect of care. But some problems with emergency care and hospitalization are long-standing, at least from a patient-perspective.
My son Danny is a complicated person: He is 45 years old and has severe Cerebral Palsy, profound intellectual disabilities, severe visual impairment, a rare seizure disorder, severe reflux, a history of gastric bleeds and numerous other problems, most of which are related, directly or indirectly, to his original diagnosis of severe brain damage soon after birth. A doctor who has not seen him before has a lot of catching up to do before he or she can start making treatment decisions. This is one reason why I almost always accompany him to the emergency room when the group home calls to tell me that his seizures are getting out of control or something else out of the ordinary merits a trip to the our local Emergency Department.
Out-patient medical procedures and hospitalization have their problems also, especially for a person like Danny who baffles doctors under normal circumstances. I’m too old to do overnights at the hospital anymore, which makes it all the more important for me to get in on the early stages of assessing Danny soon after he arrives at the hospital. For instance, if he is having seizures, the ER nurses want to know if he is flinging his right arm around because of a seizure or if that is just normal activity for him? It’s “normal”, but they may be missing the more subtle signs of ten-second seizures that make him look startled, smile, or laugh.
Whoops! The ambulance takes Danny to the wrong hospital
Not long ago, Danny had another run to the ER. We found out later he had a urinary tract infection, but that diagnosis took awhile to determine. His group home is within twenty minutes of two hospitals; Michigan Medicine has all his medical records and contacts for his doctors within the same medical system. The other hospital does not. The usually safe assumption by the group home staff is that the ambulance will take him to the right hospital, but this time that did not happen. When more than 30 minutes had passed since an ambulance had left to take Danny to the ER and he had not arrived at the U of M, the group home called the other hospital and determined that Danny was there without enough information to figure out why he was there or who could make medical decisions for him. I drove over there while they arranged for him to be transported back to the correct hospital.
Danny has not had a lot of luck in his life, but at this particular moment he lucked out with a nurse who had a family member with cerebral palsy. She got the transfer to the other hospital going, knowing exactly why I would want him moved to be close to his doctors and medical records, and Danny was as happy and content as he could be with a festering UTI and waiting for his second ambulance ride of the morning.
In praise of the other hospital: A few years ago, we suspected that Danny had aspiration pneumonia and his oxygen levels were declining rapidly. Because the other hospital was a few minutes closer, it made sense to get him there as quickly as possible. He spent a day in intensive care where they got him stabilized and on antibiotics and a few more days weaning him off of oxygen so that he could go home. They gave him excellent care. As a a smaller hospital (though large by most standards in rural areas) it was less of a rat race than the U of M hospital. For instance, the ER has its own free parking lot, so that visitors do not have to wait for valet parking or park in a huge parking garage where it might take fifteen minutes or more to make it down to the hospital Emergency Department.
Hurry up and wait! Pre-COVID days in the ER were not much better
Many years ago when Danny was still in school, he rolled off a changing table and hit his forehead on the floor. This was a dramatic bloody event, but did not do any permanent damage. The ER was full that night. One of the people waiting to be seen was a young woman in a wheelchair who, like Danny, was a frequent flyer in the ER. She was in her element, chatting with other patients about her ailments and high-fiving the staff who seemed to know her well. Others occupied themselves patiently chatting, reading, or watching TV or moaning, depending on how ill they were. Danny and I waited for hours - we watched a full episode of ER on TV while in the actual ER. A triage nurse had stopped the bleeding from Danny’s forehead and put a butterfly bandage on the wound. It took so long to get in to see a doctor, that the wound had begun to heal and we were sent home without further treatment.
At another ER run with Danny, we sat for hours with a waiting room full of miserable sick people, one of whom finally stood up and said, “If I’m going to die, I want to die at home, rather in this waiting room!”. She stood up and left along with a number of other people who had also come to the end of their collective ropes.
First-come, first-serve is not always the best way to deal with all ER patients
Danny has a feeding tube. The outer part of the feeding tube can easily be replaced by the group home staff, but on one occasion they were unable to do this successfully. A nurse at his primary care doctor’s office could have handled this in less than 15 minutes, but it was after hours and the ER was the only alternative. Without the feeding tube working, he could not get food, water, or his seizure medications.
At the ER, Danny waited his turn. It was not until 3:30 in the morning when someone could attend to him. By that time he was having seizures with increasing frequency and needed his emergency seizure meds that stop seizures in their tracks. If the ER staff had taken him first, regardless of what seems fair to other people, he could have been out of there in twenty minutes, instead of occupying time and space needed for other patients, not to mention the expense. Instead, he missed a feeding and his seizure meds that evening and spiraled into a completely avoidable major seizure event.
This has also occurred while he was in the hospital waiting for a test to determine the cause of a gastric bleed. He was not allowed food and water so that he could be safely anesthetized, but because of delay after delay in administering the test, he ended up going for days without nourishment, except when we insisted that they give him a feeding in the evening before another scheduled test. That hospital stay also included a bout of uncontrolled seizures. I also think that being thrown so far off of his schedule for feeding and seizure medications, it took extra days for him to recover. After he got home, he started having seizures again a day or two later.
People with extraordinary medical needs, especially those who are seen frequently in the ER, cannot afford to wait their turn. One partial solution is available through a local ambulance service. They will send paramedics to the home to assess the condition of the person needing care and give advice as to whether a trip to the ER is recommended and then take the person there if it is.
Michigan has closed all its publicly operated Intermediate Care Facilities that in other states serve people with the most significant medical and behavioral needs. An ICF, funded by Medicaid, is usually equipped with the medical expertise to take care of a person like Danny, but the ideology of the day considers these facilities too “’institutional”, assuring the public that they are unnecessary. What often happens is that one “institution” (an ICF or nursing home) is traded for another, a hospital, for instance, and overuse of the ER for what is routine care for a person with extraordinary medical needs. The criminal justice system for a person whose behaviors are out of control often replaces the expertise available at an ICF to react to these events.
The way the hospital handles complaints is important
In another case of an ER visit going badly, my other son, Ian, was brought to the ER with a swollen knee. [Ian also has CP and a number of the same problems that Danny has. He is a good-natured fellow who endures medical emergencies more easily than Danny].
The group home noticed that Ian’s knee was swollen. It was after regular office hours at his doctor’s office. We did not know if this was a serious problem - Ian has no ways to communicate how he feels or what happened to him. We arrived at the ER around 6:30 pm with an aide from the group home. We waited about an hour, when he was called in to have an X-ray of his knee. Then we waited for him to be seen by a doctor. Not wanting to be too pushy and having endured many hours-long waits to see a doctor when the ER waiting room was full, I waited until after 11 p.m. to ask at the reception area how much longer it was going to take. The nurse looked into it and finally said that Ian had discharged himself from the ER at 7:30 pm. A man who has never talked or had any reliable mode of communication and is unable to tell you how he feels discharged himself from the ER?
While Ian was getting his knee X-rayed, someone had called his name to be seen in the ER. He did not respond and we did not hear the call, so the assumption was that he just left.
By the time we found that Ian had been dismissed from the ER, he had already missed dinner and his evening seizure meds, so we decided that he should go home and be seen by his doctor the next day. We found out later that Ian had a fractured knee-cap. If he had been mobile and was putting weight on it, it would have been painful and might have eventually needed surgery. He is not mobile and the best thing to do at the time was to wait and see if it would heal on its own. As far as we know, it healed well and has not bothered him or caused any further trouble.
The way this had been handled by the ER, especially the fact that they did not seem to know that Ian had already gone to Xray was egregious, but without serious consequences. At the time, the University of Michigan had come to the conclusion that sometimes it was better to fess up to mistakes and fix whatever caused the problem in the first place. The U of M also had some evidence that handling mistakes in this way was actually preventing some lawsuits against the University.
I filed a complaint and got a letter back from Patient Relations after an investigation of the matter. They agreed with me that none of this should have happened and had met with staff to make sure that such a simple avoidable mistake did not happen again. The hospital did the right thing, made the staff aware of a really stupid mistake, and maybe improved the situation for other patients. I think this affects everyone’s morale. It is easier to take care of a mistake immediately with a little honesty and de-escalation techniques that leave room for a successful resolution of any dispute.
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For complaints at Michigan Medicine, contact Patient Relations.
Phone: 734-936-4330
or toll-free at 877-285-7788
Monday-Friday 8 a.m. - 4 p.m.
Walk-in: During the COVID-19 pandemic many Patient Relations staff are working remotely to help minimize the number of people in our hospitals and health centers. Please call our office to speak with a Patient Relations staff member directly or to schedule a future appointment at 734-936-4330, Monday through Friday, 8 a.m. to 4 p.m.
Online: Concern form (secure and confidential)(link is external)
Download the Patient Relations Brochure(link is external)
Please have the following information ready when you contact Patient Relations:
• Patients MRN or Date of Birth
• Date the concern occurred
• Name of the Department Involved
• Name of the people involved
• Concise explanation of the concern
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