My 83-year-old father was totally independent, driving a stick-shift sports car, teaching computer classes, and sitting on his condo board. He would meet up with people of all ages and hold court at Starbucks 6 days per week. He helped me with my errands, showed up for brunch or dinner on Sundays, and texted me at least daily.
In mid-August, I got a phone call from him. He is very hard of hearing, so he rarely calls and just texts. “I am having chest pain,” he said. “EMS is on their way.” I was shocked that my dad, who has never been admitted to a hospital even for his birth, was having a health problem. I was in New Jersey with my daughters and could not return until the next day. He said he had taken an aspirin and would stay in touch by text.
Unfortunately, he was not sent to a Henry Ford Health System (HFHS) facility, a place where, after 32 years of employment, I could get all the assistance and support I needed, because I was family. He was sent to a good hospital, but not my hospital.
He arrived a little after 9:00 p.m. on a Saturday night and was taken to the cardiac intensive care unit (CICU). I was able to speak with a cardiologist, who assured me he was stable and doing well. On Sunday morning, he would undergo cardiac catheterization, and a stent would be placed if needed. They would keep me posted.
My dad was upbeat, engaged, talkative, and out of bed to use the bathroom. He continued to text me from his hospital bed, keeping me posted.
On Sunday morning, the cardiologist reported that, after looking at the catheterization results, he chose to do a radial artery stent as opposed to a femoral artery access, despite my father’s age, to allow my dad to go home sooner. After all, the cardiologist told me, 90% of all stents he did were radial. My dad and the cardiologist chatted before the procedure. Unfortunately, an 83-year-old’s arteries may not necessarily be conducive to a radial stent. The cardiologist was able to pass a balloon, but he could not get a stent in place and continued him on intravenous fluids and medications. On Monday, he said, he would try a femoral stent. Dad was talkative after the procedure and returned to his room. And then life changed. Within hours, he became confused. The CICU staff decided that he would need medication to help him calm down. The medication turned out to be Haldol (haloperidol), Ativan (lorazepam), and benzoates. ALL of them. By the time I got off the plane, he was in five-point restraints, a catheter had been inserted, and he had no idea where he was or who I was. And the staff said, “It must be hard to see your father this way.” Seriously.
On Monday morning, dad was confused and combative as he was taken for his second attempt at a stent. The nurse transporting him insisted on more Ativan. I argued my case and lost. That would be the last battle I would lose in pursuit of his care.
Needless to say, the second stent attempt was canceled because he was too confused and restless. I was asked whether this was alcohol withdrawal, whether he was always this confused, whether he had dementia. And I wanted to scream at them as I tried to explain the man he was just 3 days ago.
To control his care and stop all of the heavy drugs, I had to be at the hospital on and off all day, being sure to chat with his care providers at every shift. My daughters each took turns. I literally had to bring the hospital’s clinical pharmacist to his hospital bed to explain the bad things the drugs that were given to him do and for how long their effects can last in an 83-year-old man. Physicians of all specialties came and went, forgetting that he was hard of hearing, not looking at his record, never piecing together the history of what happened, and never explaining why they were there. My phone calls and pages to the physicians went unanswered.
I looked for every morsel of common denominator I might have with these folks to try to get them to take me seriously. The best weapon was our current division head, who had done her residency at this hospital and was chief resident at that time. Dropping her name helped. The staff saw me there at every shift change, and I am sure had names for me, but that was OK with me.
It took 5 days to get a stent placed and almost 2 weeks before all the drugs were gone and dad was less confused.
During my father’s stay, Health Alliance Plan (HAP), the HFHS health maintenance organization, requested that my father’s cardiologist speak with one of our system’s cardiologists. They were not moving my father, but they needed a report to allow him to stay where he was. The cardiologist refused, incensed that HAP wanted him to speak to a Fellow. “I do not speak with Fellows,” he said. Honestly, I thought, the Fellow probably does not want to speak with you, either, but I need my father to be able to continue his care. The call was never made. I had to be the go-between to extend my father’s care. Thankfully, the medical director at HAP helped me.
After 2 weeks, I was able to convince the cardiologist to transfer my father to an HFHS rehabilitation center. There, I carried a tad more weight.
My father still had a catheter in place and had experienced two urinary tract infections (UTIs). It took me 1 week to convince the rehab center to remove his catheter. I pointed out that they had placed him in adult diapers when he arrived, so if he had an accident, he would be covered. He had symptoms of a UTI as the catheter was removed. I had to argue to get testing done for treatment. I finally called one of our system’s urologists to intervene.
My father was still confused and, at times, combative. A patient care conference was held. One of the nurses asked what was the psychiatrist’s diagnosis that required my father to take quetiapine fumarate (Seroquel). There was NONE. As it turned out, after I had been able to get the staff at the hospital to stop my father’s other medications, someone had started him on Seroquel “to keep him calm.”
My father was then weaned off of this medication, and his usual personality returned. He was able to start doing the physical therapy he needed to get him home.
To assist with supporting my father’s care, I was advised by a good friend to offer to do an in-service training session on diabetes for all shifts at the rehab center. “They will love it,” my friend said, “and then you will know everyone.” It was a great idea, and it truly helped.
My father spent a month in rehab. To be sure all continued to go smoothly, I hired someone to work with him and keep him company 4 hours per day when I could not. She was my eyes and ears and pushed my dad to recovery. I was able to visit him daily after work. The staff members were kind to him, but he received an hour of physical therapy and occupational therapy 6 days/week, while the rest of the time, he lay in bed or sat in a wheelchair in the hallway.
After 4 weeks, the physical therapist called and said he thought my dad needed another 4 weeks in rehab. I packed his bags the next day and took him to his condo.
Home for my father is a small, two-bedroom condo. Before he came home, we outfitted it with hospital equipment for his safety. For the first week, my daughter and her husband took turns staying the night; the woman I had hired while he was in rehab came to his condo while I worked, and my daughter and I filled in before and after our work.
This arrangement was not sustainable, so the hunt for an alternative began. Dad is now entrenched in senior living. He quickly agreed to the place I found, which provides a one-bedroom apartment, three meals daily, and housekeeping. He needs support with activities of daily living, but he is doing well.
So what lessons have I learned?
Life changes quickly, and there is no way to be ready for the changes.
Even in good health care systems, the care provided may be disconnected and not in the best interest of the patient.
People who are not health care professionals often face an impossible task trying to navigate the maze we call health care for themselves or their loved ones.
If you or someone you love is admitted to the hospital, someone needs to be your eyes and ears daily.
Electronic medical records (EMRs) are amazing in many ways, but my dad ordinarily received health care from HFHS and a Veterans Affairs facility. These two EMR systems could not be accessed by the hospital where he was admitted, rendering them, for our purposes, useless and leaving us without access to his medical history. Additionally, the rehab center did not use an EMR. A month of health care is now lost in a maze of paper medical records.
Continuity of care was not a priority as my father was transferred from the hospital to the rehab center and then to outpatient care. Had I not been his eyes, ears, and voice, much would have been missed.
No one recalled my father’s independent life before his myocardial infarction. Had they taken the time to understand his usual demeanor, they would have realized how much the medications and the care provided were hampering his well-being.
If you are not in the health care field, it is a really bad idea to become seriously ill.
My strong and, at times, assertive personality, in negotiating for my father’s needs was definitely an asset to my father’s health care journey.
What can we do for others who must take this jouney ?
Better awareness, support, and respect of the needs of the elderly
Inclusion of family members who know the patients' needs firsthand
Early use of inpatient social services to help coordinate care
Awareness of the effects of anti-aggitation medication in the elderly and limitations on their use
Widespread integration of EMR
Utilization of home care system when feasable
Support for the family members in addition to patients
As a health care provider, I am saddened by my father’s experience and the many similar stories I have heard. I am thankful for the colleagues in my own health care system who helped me get my father the care he needed at the time he needed it. And I am grateful for all of the support we received from family, friends, and coworkers, who listened to me ramble daily and helped me get through each day. Most of all, of course, I am grateful that my father is now doing well.