Inside the medication mill; What is wrong with healthcare in Florida?
The last few months had been surreal with the loss of my dad who passed away just after his 93rd birthday. Some of his health problems were from good intentions gone bad. Incontinence appeared years later after he was diagnosed with prostate cancer and after a second opinion from Sloan Kettering. He was offered the treatment option of radiation treatments that were considered safe and had few side effects when compared to surgery. Years later, these patients often became fully incontinent; an unwelcome surprise for an active aging adult man in his 80’s.
My mom had a tough time with my dads final few years because of his incontinence and from a fall he had that fractured his left hip. He recovered however, the anesthesia did affect him mentally, a problem that slowly progressed through his final year. She did the best she could with the help of home health aides who were there to help her even through her most difficult moments with him.
The last months before my dad passed, the medical system had her visiting so many doctors for my dad that when she banged her leg on a table at a podiatrists office and cut herself, she developed sepsis from the injury after ignoring her own health needs.
Mom needs a walker and has poor balance after a hip replacement surgery damaged vital nerves in her leg. This was years later after having her right knee replaced and then having a fall that fractured that same leg two years later. If you have older parents, you probably relate to stories like these. Ironically, I had evaluated her knee and the hip prior to these surgeries and functionally, these joints could have been rehabilitated with the right therapist. Unfortunately, none of the therapists were helpful to my mom, and she did not live close enough for me to treat her. As a result, she consented to surgery due to the pain in these joints.
When it was time to consider hospice, my dads cardiologist suggested the idea of pinning a flailed heart valve responsible for his breathing difficulties, while reminding us that this risky procedure was only palliative to make him more comfortable in his remaining time with us. The idea was that they would go in through the groin and pin the valve, improving the circulation. Combining this with my dads other problems such as being legally blind and having low energy levels with congestive heart failure, I am not sure why this idea was ever presented. The procedure merely complicated and elongated my fathers death, worsened his dementia, while the choice of hospice as initially recommended by a social worker was the best choice for his last few days, as this type of care would have been palliative as well, without the risks associated with surgery on a 92 year old man.
While dad was having his heart procedure, mom had grown weaker with each bout of expensive antibiotics for sepsis, and then afterward she was hospitalized for pneumonia which developed last July.
The day of the procedure, the doctors, as they usually do come out in their surgical smocks and tell you how well the procedure did, although, they also said they used regular anesthesia, something we had discussed prior as a risk factor for worsening dementia. As predicted, he awoke confused and over the next couple of day was taken out of bed. While his breathing had improved, he was less aware of what was going on and he was less able to converse than he could prior to the procedure.
Meanwhile, mom was continuing to treat sepsis using medication that made her feel ill. Eventually, they switched the medication however, she now had to go to the hospital to get Medicare to cover it. Apparently, the other drug that did not make her feel ill could only be administered at the hospital.
A month later, when she developed pneumonia, they gave her an antibiotic that made her feel nauseous and made her lose her appetite. My mom was not great at tolerating medications and these made her despondent and weaker. Soon, she was released and the hospital released her, although a cough persisted.
During this time, my dad would sleep most of the time and in late July, the social worker came by while my brother was visiting and said he needed hospice. Meanwhile, mom was now in the hospital with pneumonia and her new internist affiliated with JFK hospital that was recommended by her cardiologists associate did not return phone calls either from us or from my mom.
She finally got out of the hospital. I visited two days before my dad passed after the hospice nurse said the end was near.
Two days after I helped my mom make funeral arrangements, dad passed away.
Mom was on this whirlwind of burying my dad, dealing with a cough from pneumonia and visiting us for the week to observe Shiva , which is a Jewish period of morning. She had not been up north since she sold her home a couple of years prior.
After she came home, she was readmitted for pneumonia, her primary doctor was nowhere to be found and her cardiologist was our anchor. The medicine made it impossible for her to eat and left her constipated, leading to a second problem of diverticulitis, requiring again a hospitalization and more antibiotics.
Meanwhile she was feeling very ill from the medications, had no energy and was unable to eat due to nausea. After inquiring, I found out there were four pages of medications on the list that almost all caused drowsiness and nausea. How many med’s does one need and where was the hospitalist?
After talking to her cardiologist, he agreed the list of medications was absurd and was likely making her nauseus while causing constipation and making her feel weak. We discussed eliminating many of these meds that were not essential. Eventually, they sent her home and I eliminated some more drugs while the dose of Augmentin they sent her home with again for diverticulitis had her feeling ill. I suggested it was time to stop taking it, even though all the doctors insisted it was essential. Luckily, she already stopped taking it on her own.
Were they trying to cure her or keep her ill to generate more hospitalizations? I guess we may never know however, this experience, and the previous experiences of many of the things my dad and mom endured at the hand of the healthcare system makes me advise others to be cautious when getting medical recommendations, as the care is expensive as well as life altering in ways you couldn’t ever imagine. The bottom line is, unless absolutely necessary, avoid most medical procedures, most drugs unless absolutely essential and more importantly, most hospitals.
My mom is recovering nicely, eating well and slowly getting her strength back. This is a microcosm of what is wrong with healthcare in Florida, and in other areas of the country too. The list of medications she was being given was unreal, and so were the side effects. This was not healthcare, but was care that would make you quite unhealthy. The final insult was the bill you get for this poorly coordinated care of both my mom and my dad. With all the people and all the moving parts present, where was the primary doctor? What about the hospitalist who is supposed to be primary care inside the hospital. Does anyone there have a clue? Wouldn’t we be better off with a simpler system, without the perverse procedurally driven incentives insurance offers? Maybe our cost problem is a combination of the payors, the large hospital systems and the doctors, while the nurses try to smooth out what others in the hospital system mess up.
The moral of this story; with any healthcare problem, the American system is a mess. For your parents or a loved one in the hospital, be their advocate. If not, the system will likely kill them and then bill them for it.