Nine years ago, my father was diagnosed with Parkinson’s disease. It’s a testament to his character that he used that diagnosis not as an excuse to retreat from the world, but instead as a reason to become more engaged with it. Since then, he’s traveled the world and become very involved with Rotary International, through which he has helped establish children’s burn centers in Chile and AIDS clinics in Ethiopia. He was honored for his work by being named Rotarian of the Year, an accomplishment that he’s very proud of.
Late last year he suffered heart trouble, which led to a substantial decline in his mobility and speech, to the point where he became wheelchair-bound and could no longer be involved in his many charitable activities. Last month he opted to undergo deep brain stimulation (DBS), a surgical procedure that has had success in improving the lives of those who suffer from Parkinson’s.
Four hours into the surgery, we received word that it had been aborted. Two hours later we found out that an intraventricular hemorrhage had occurred – a vein had been hit, leaking blood into my dad’s brain. This was a potentially life-threatening situation, and even if my dad survived, there was a good chance that his brain would be permanently damaged.
The next two weeks were spent in the intensive care unit (ICU), during which time we experienced the incredible flaws in our medical system. The doctor, despite being a well-respected surgeon, was an extremely poor communicator, and did very little to help our family understand what was going on and what needed to be done. Rather than help us deal with the situation, he basically left it up to us to be in charge of communicating with the various staff involved in my dad’s recovery.
It is absurd that this situation exists. A sane system would assign the equivalent of a case worker to manage all aspects of an ordeal like this on behalf of the patient and their family. Instead, our family – already traumatized by seeing our father with tubes coming out of his brain, eyes rolled back into his head – was somehow expected to navigate the insurance-dictated (and ego-driven) landmine of our "modern" healthcare system with very little assistance.
Although on the whole the nurses were excellent, there were some whose bedside manner was non-existent. More than once I had to force a new nurse to introduce themselves to my dad before poking and prodding him. Worse, nurses changed on a daily basis – we always had to make sure that the "nurse of the day" understood my dad’s condition (often, they didn’t), and we had to watch over everyone to avoid the mistakes that plague our healthcare system. We witnessed more examples of errors than I can recount here. Incorrect dosages of important medicines, failure to deliver medicine when required, ignoring alarms on machines attached to my dad, neglecting to change my dad’s position (resulting in bed sores), bringing him solid food even though he couldn’t even drink liquids – you name it, and we probably saw it.
Soon after my dad became conscious, it was apparent that he was extremely confused, unsure of where he was or even which year he was living in. He was hallucinating, seeing people, animals and strange objects around him. One day he’d believe he was in Denver, CO, and the next he’d think he was in London. Some days he’d think I was someone who worked with him years ago, and he’d ask me to help him finish a work-related proposal despite having retired several years ago.
As you can imagine, we were very worried that what he was experiencing was permanent. The doctor said he was most likely suffering from ICU psychosis, which often accompanies extended stays in intensive care (which makes you wonder why hospitals don’t realize that any room that turns people psychotic needs some serious rethinking). But he couldn’t rule out permanent brain damage.
To make matters worse, we later discovered that the doctor didn’t even take our concerns seriously. Every time we met with the doctor – which, it must be said, was an all-too-infrequent event – we asked what could be done to ease my dad’s delusional behavior, but it wasn’t until he experienced my dad’s confusion himself a week later that he took any action to improve the situation. Regardless of whether the surgical mistake was a result of negligence, I firmly believe that this doctor had a moral responsibility to help our family in any way he could, and he failed to live up to that responsibility in so many ways.
After two weeks in ICU, my dad was transferred to a non-critical care room. At first we were delighted, because we assumed it meant that he was recovering. But soon we were more worried than before, because my dad’s "psychosis" caused him to believe that he could still walk. Despite his weakness, my dad’s willpower was enormous, and his upper body strength was impressive. He struggled (and many times succeeded) to get his legs off the bed, and numerous times came close to lifting himself completely over the edge, yet the hospital staff consistently failed to respond to the bed alarm. Had we not been there, there is no doubt in my mind that he would’ve fallen off the bed and seriously injured himself.
In fact, one day we stepped out to visit a rehab center for a couple hours, and returned to find him hanging sideways, with his upper body stuck in a painful position that made it harder to breathe. His lunch was on a tray in front of him – and was cold. He had been like that for at least 30 minutes (probably much longer), and nobody had checked on him despite the ringing bed alarm.
We had to stay with him every night to keep him safe, and every night was a sleepless exercise in explaining to him that he couldn’t walk yet, being careful to do so in a way that didn’t lead him to believe we were keeping him captive. Ten minutes after he said he understood, he’d be at it again. It was excruciating for both him and us. After a week of this, and a week of complaining to the staff about it, the hospital finally told us they could assign a "sitter" to watch over him at night. Had we known we could get a sitter before then, we could’ve saved ourselves a lot of needless suffering.
After a week of being out of ICU, my dad’s psychosis didn’t go away. Not only was he still hallucinating, but at times he was also paranoid, believing that we had somehow created an exact replica of the hospital and imprisoned him in it to make him believe he was in a real hospital. I was only able to convince him otherwise by reminding him of Occam’s razor, a scientific principle which basically says that when a situation has multiple answers, the simplest one is usually correct. The simplest answer in this situation was that he was actually in the hospital, and was suffering from post-op confusion that led him to believe otherwise. My dad had spent over forty years in the in the nuclear power industry, both as an engineer and as a manager, so appealing to his sense of reason provided the best results in many similar situations.
The doctor still believed that ICU psychosis was to blame for his behavior, but we were increasingly convinced that it was the result of his changing my dad’s medication, especially his dosage of REQUIP
, which is commonly prescribed to Parkinson’s patients and is known to cause delusions. Once the dosage was significantly reduced, my dad’s behavior became much more predictable, and he stopped suffering from paranoia and hallucinations. In my opinion, my dad’s doctor should’ve recognized this long before we offered it as a possible solution.
Earlier this week we moved my dad out of the hospital and into a rehabilitation center, which should’ve been a reason for joy but instead resulted in even more trouble. To my shock, the ambulance that transferred him wasn’t air-conditioned, a terrible situation for a patient who was already dehydrated. He spent the entire 90 minute trip perspiring like mad, strapped to a stretcher that made his bed sore excruciating. When we arrived, we found that the hospital hadn’t provided the rehab center the correct information about his meds, resulting in him not receiving important medicine for an entire night.
As a write this, it is now my dad’s second day in rehab, and I’m happy to report that things are going well so far. We chose a rehab center that’s surrounded by trees and natural beauty, a welcome change from the four walls of an impersonal hospital room. I took him on a tour of the outdoors in his wheelchair, and you could almost feel the improvement in his well-being. Honestly, I don’t know yet whether to be hopeful, because he’s suffering from so many different issues, and we know he will remain permanently changed by this failed surgery. But his inner strength has pulled him through seemingly insurmountable situations before, and we want to count on it pulling him through this one.
I could end this post here, but instead I want to say how absolutely disgusted I am with our healthcare system. Far too many times I had to shout at people to get them to act. I witnessed far too many mistakes – many of which I haven’t mentioned here – and encountered far too many uncompassionate people to ever believe that our medical system is working.
Numerous friends I’ve spoken with have recounted similar horror stories, as I’m sure many readers here will, too. My father is a wealthy, well-connected, fully-insured, brilliant man, and this all took place at what is supposed to be one of the best hospitals in the country. If the healthcare system failed him, it will fail the rest of us, too.
I was looking for interesting web info and found your site for the first time. And this post has stopped me in my tracks.
I sincerely hope your father recovers! He is fortunate to have such a wonderful family. But that is most likely a result of his own character.
This is the second disturbing story I have heard recently. The first concerned a family member and an unfortunate surgery that resulted in his pulling out all the tubes attached to him so he could die.
It might help our health care system if stories like these could be shared in a more public way.
Sincerely,
Susan Fitzgerald
Good heavens, Nick, I don’t even know where to begin. This is absolutely horrifying. I know you experienced a frightening medical experience yourself – was your hospital stay like this?? There were certainly some mistakes during my last 2 surgeries, but nothing to even compare to your father’s story. Though, I look back now and realize that ending up in ICU after my back surgery because the anesthesia was too much for my body size was probably a biggie. The experience after the hip surgery was totally different as the anesthesiologists took the time to understand my previous experience.
Thank goodness you were able to be with your Dad during this entire time and monitor the situation. There are so many folks who don’t have that level of support. I just posted today about a little wake up call in regards to health insurance in this country. There are so many people who don’t stand a fighting chance.
Karyn
Nick,
I just happened to land on your blog and after reading your post concerning your dad and the hospital I couldn’t not leave a comment. I have experianced many times the lack of responsability in our hospitals such as you have described what happened with your dad and the public should be made aware that these things happen everyday in our health care systems.
Years ago my younger brother was being treated for luekemia and the negligance of the hospital caused his death. He had succeeded 2 standard rounds of chemo and was cancer free, gaining his weight back and hair when the doctor insisted he complete the protocal of the third round just because it was the standard and gave no consideration for the individual he was treating. Third round was given after he bullied my brother into taking it and then he was released to go home for Christmas. New Years Eve he started running a fevor and felt like his chest was congested so off to the hospital he went. Over crowded hospital and understaffed for the holiday, they placed him in a room on the cardiac floor instead of the cancer floor in isolation. Next to bring his fevor down they placed him on a ice mattress and rubbed his body with rubbing alcohol. Xrays kept being taking and we kept asking if he had pnemonia and they said no. His doctor was across the river from the hospital celebrating the New Year and never responded to the calls from the nurses. After almost 20 hours they told us he had pnemonia and they had to place him on a ventalator to help him breath. His kidneys began to fail and they told us he would be in ICU for 4 to 6 weeks and we needed to calm down and go home. We refused. He was hemoraging from the trach in his throat with no ability to stop the bleeding. They ended up giving him a shot to relax his muscles and from fighting the trach. The shot went to his heart and killed him. The doctors kept telling us they could not understand what had happened and we requested an autopsy. The hosptial called the funeral home and released him before the autospy was performed. The multiple mistakes they made spurred his death. We hired an attorney to sue for malpratice and before we got beyond all the stages the attorney we hired excused himself off the case because the good doctor had bought a beach house next to his. I convinced my parents to let it go so we could begin to heal our emotions. I am a firm beleiver in we have to take more control over our medical care and not just trust the health care system blindly. I applaud your family in demanding to know what was happening and making them listen to you…something they forget that we are more than an insurance claim to collect upon.
Hey Nick:
Your story of your Dad’s stay at Hopkins was most poignant. I was in a hospital for a week once, and although my care was considerably better than your father’s, I still had to watch over the nurses and doctors like a hawk to make sure they did and didn’t do every thing they should have or shouldn’t have. At least I had the presence of mind to keep an eye on things.
The best advice I could ever give anyone stuck in a hospital without being fully aware of what was going on around them would be to have family there 24/7 to ensure their well being.
I hope your Dad recovers fully.
Nick – Thanks so much for taking the time to write this up. It’s hard to fathom just how badly served your Dad was during his stay – how fortunate he is to have had you and your family nearby to keep him safe. He remains in my prayers, and I hope his time at the rehab center helps accelerate his recovery.
Nick,
First, I’m terribly sorry to hear about your dad’s awful experience. I’ve subscribed to your blog for some time now and hate to hear about this happening to someone I feel as though I know, if only through reading your blog.
Unfortunately this story is all too-common. I’ve worked in healthcare for ten years and have seen just about every aspect hands-on: clinical, technology, regulatory, reimbursement, quality assurance, etc… There is no question that our system needs (a lot) of reform. It’s a complex problem that we have and our legislators are doing little to really help fix these problems that you’ve mentioned. I don’t believe that it’s from a lack of care, but rather a complete lack of understanding of the problems and how to bring about resolution.
Technology is playing a HUGE role in healthcare today and it is absolutely frightening how little standardization there is. Healthcare data is “supposed” to be communicated between systems using an ANSI protocol called HL7. I’ve spent the better part of my week trying to get our pharmacy management software to communicate with some automated dispensing systems that we have in place. The automation vendor sent a complete data dictionary and protocol manual to our software vendor. They developed an interface accordingly… which proceeded to not work at all. Several phone calls later it was determined that a different version of the “standard protocol” manual had been sent by mistake and a lot more work was required to make the systems talk. We’re still having issues.
Long story short, technology really does play a huge part in preventing problems like your father’s medications not being continued properly at the rehab center. Rather than fax discharge orders from the hospital, why not send the discharge prescriptions to the rehab center electronically? That would require some standards to be agreed upon for the various systems to connect, but would improve patient safety and reduce cost.
Money seems to be at the root of every excuse for failures in our healthcare system – not enough nursing time, not enough equipment, no money for technology. But I argue that NOT devoting more money directly to technology – interoperable, standards-based technology – we are actually introducing more cost to the system. Medication errors that could be prevented by transmitting electronic prescriptions to provide better continuity of care cost the system literally millions of dollars each year. Instead of making those costly mistakes, let’s deploy some dollars to prevention.
In a nutshell, that’s my prescription for fixing healthcare: focus a lot more on prevention and we’ll have to spend a lot less on treatment.
I hope everything works out for the best.
Thank you sharing this heart-rending experience, Nick. You and your family have been in my thoughts since I heard what was going on. And I could feel your pain, even in your 140-character-or-less tweets. Please take care.
I was glad I stumbled across this .
Yes it is a wild ride you have had.
In my URL though, I can ask you to check out its products?
You did mention the Cardio Vascular problems,
the site above has Cardio.
However, and my Mum is in Auckland Hospital in NZ,
a public one.Thankfully the Doctors there do seem to make one feel that it is an honourable and clever thing to be a doctor, because General practitioners here just seem to give steroids or antibiotics or the latest pharmaceutical wonder willy nilly.
My Mum is 92 now but the last two times she was in hospital were because of things prescribed.Thankfully the doctors at the hospital found this out and recommended they be removed from what she takes.a couple of them were removed from everybody else in the world too…like premarin and vioxx.
She connected to tubes, but I can spray the transfer factor spray into her mouth.I have seen TF to work too many times not to do this.
I think that the doctors are cutting me slack because of her age,but this sort of thing could be a no no in many hospitals.
Please google transfer factors.
I think it should be taken in an on going fashion.
Nick,
Sorry to hear about this. I’ve experienced similar situations with relatives at hospitals – I don’t know what can be done, but something needs fixing.
I think brain damage is just about the worst thing to have to go through.
You and your dad are in my thoughts.
I am very sorry to hear all this. Unfortunately, the healthcare system in germany is not that much better anymore. What also frightens me is to hear, that not even “a good, private insurance” will do it – which is what many people here believe is true. How to solve this? Does the personel need to be paid better? Need more “education”? What is it? What could be done to improve all of this.
I experienced a somewhat similar case in US , but lack of love and affection contributed more to the downfall of that old patient’s rehab.Some dont care what the elders feel or think,they just treat them like a bag of dump.
I Feel really sorry for them.But helpless!!
I really sympathise with your situation because I’ve heard of things like this before. A year ago this month my wife was in the hospital – we had an ectopic pregnancy. She was screaming in pain and the doctors described it as a mild discomfort until they actually saw her sobbing and literally screaming in agony.
This situation pretty much persisted over a 2 week period.
This is the main hospital in Galway. They just announced that from this year, they are planning to close the hospital every August, not for refitting but to save money. They struggled to find my wife a bed and now they are closing the place for a month every year….
FYI, Ireland also is pretty much a private healthcare system…except you still have to pay for most things even with the best health insurance.
wish your dad speedy recovery.
First of all, my thoughs and prayers are with your father and his family. Speaking for personal experience, I know how hard dealing with the medical sector can be. If it means anything; I believe your father is fortunate having such a caring, passionate son.
Unfortunately, things in the US aren’t much different from we’re I’m living (in the Netherlands). We’re both wealthy, well-insured and highly educated countries, but apparently, we cannot seem to run a medical sector without serious mistakes.
Apparently, we are allowed to pay outrageous insurance premiums (most of it going into the pockets of the middle-tier management layer – not the people who are actually standing next to the patient’s bed), but when it comes to being an assertive client/customer, we’re not allowed to critisize or speak up. I have experienced this on multiple occasions, after being the victim of medical stupidity (yes, you’re reading that correctly: stupidity).
My advice: keep out of the hospital as long as you can. Things might actually get worse in there. Don’t believe all those praises of our “wonderfull medical science”. Most doctors are socially inadequate. They do not seem to comprehend that putting a patient’s mind at ease is an important aspect of the healing process. I feel constantly treated like a dumb, non-educated moron that they look down to. I might not have studied medical science allright, but I am an educated person, and I do have a healthy mind and can actually think on my own, thank you.
Lack of money is always their excuse. And that’s why we’re pumping more money into the system, year after year. However, things don’t seem to improve. That’s why I believe we should freeze the amount of money we pump into the system, and have them fire all the middle-tier managers walking around in hospitals. Stop the ourageous amount of administrative rules and regulations that are forced upon doctors and nurses (some of them are spending more time in meetings and filling out of forms, than that they are actually treating patients). More effiency would be nice, but be carefull not to provide the pharmaceutical industry with too much power because they will always put commercial interest above patient care. And the latter should always be #1.
I’m afraid things will need to get worse – a lot worse – before things will change drastically. We haven’t seen the bottom yet, I’m afraid. I do hope my family will somehow not get affected by the system, but I don’t hold my breath.
All the best to you and your family in these difficult times.
Nick,
My prayers are with you, your father and your family. This is just a horrifiying story… even more horrifiying in that I am sure it is the norm rather than the exception.
I recall seeing a report about out of country medical centers. These places are admitadly and will do some procedures that you can have done in the US. However, the report talked about the extreem emphasis that in addition to medical care was placed on customer server.
The few they showed looked like 5 star hotels. The staffs were attentive to the patients and their families. Granted I think they more catered to elective type surgeries… however my point is, if place like Singapore and Mylasia and Dubi can provide this type of medical care why can the US (the supposed riches country in the world) do the same.
…and people want socialized health care… I think that will just make it worse… and as you say we can’t deal with worse than what we have now.
BOb
Nick,
I couldn’t tear my eyes away from the hospital horror that you described in your post. It’s absolutely disgraceful. I and my family have experienced some pretty negative things at different hospitals but nothing as bad as what you and your father have experienced.
Take care. Our prayers are with you.
Alex
Bob Archer raises an interesting point about health care in second-world countries. I had the same impression when I visited India; it seems medical science is more advanced over there. I’m not sure why this is – maybe the “law of declining lead”? (when you enter late, you can use state of the art technology, without being hindered by former investments). I’m not sure, but it sure is sad seeing our western societies degrade. Anyone looked inside old people’s homes recently? It is a disgrace.
My dad passed away after aspirating vomit during a hospital stay which resulted in pneumonia and a 9 month hospital stay. We figured he would be fine to leave alone since he was in a hospital after all. However the nurses never checked on him enough, never noticed he was vomiting due to bad work on his intestinal surgery, and hence never helped him up to prevent the aspiration.
I will never ever leave a family member alone in a hospital again. Hospitals are too understaffed and overworked to provide quality care.
http://rawcode.rawcode.net/?p=67
Nick,
My sympathies go out to you. I have a book of them from attending to my mother’s healthcare treatment in a nursing home for 10 years.
An interesting counter balance thought, if you will. I’m reading a book called “America Alone” where the author Mark Steyn. As bad luck as we Americans have it (myself included – just learned I have a $4,000 dental bill because the insurance company says the bridge that broke is a preexisting condition) most Europeans have to wait very long times for basic surgeries and treatments we can get at the snap of a finger.
Again, I wish you all the best, and do understand the poor treatment and heartache you are experiencing. Best of luck to you Nick. I am going to start reading your blog regularly.
Tom from Illinois
Nick,
I’m so sorry to hear about your father and the experiences you had with his treatment. My prayers are with you and your family during this difficult time.
I wish we could just chalk this up to a bad doctor or nurse, but I think it goes beyond that. Our medical profession in this country no longer requires doctors to take the Hippocratic Oath (aka “to do no harm”) and I think they spend more time in convincing doctors and nurses that the best thing to do is to just allow patients to expire when they are in a bad way.
The fact that states are passing laws allowing euthanasia is a clear sign that things have gone all goofy. I read the other day that Dr. Kavorkian is running for a seat in his state Senate or something to that effect.
For years doctors and nurses have been told to not empathize with the patients, that they need to remain aloof and cool to them.
We no longer teach compassion to anyone (let alone doctors or nurses) and then wonder why everyones seems so cold hearted. An emphasis is placed on each of us being OK and that what we think is right is the proper thing. This permeates to everything. With no concept of right or wrong and trying to mask it by saying there are shades of gray – we hide from the fact that we are teaching everyone that there is no “help the other guy” – instead it’s “every man for themselves”.
I’m sorry that this all had to happen to you and your family, I can only imagine how heart wrenching it has been and my heart goes out to all of you. But unless we start doing something and put common sense back into our society – I’m afraid that things like this are just going to get worse.
It’s not the medical fields fault alone – it goes to the very core of our society and works it’s way up into all walks of life.
When everyone is talk to not have respect for life beyond our own, we really can’t expect others to truly care beyond a superficial level for anyone else.
My final comment is “Trust in the Lord for He is good and His mercy endures for ever!”
It is indeed very horrifying , and also a shame to the health care system. Infact it is not the system which is at fault but the people managing the system. The Doctor Nurses and all involved do not connect to the patient or there families. It is not about doctor nurses caring for the patients but human caring for other human.
Hi,
Its you and your fathers mettle that you were able to come out of this dilemma. My fond wished for you and family, and i wish your dear dad a smooth and fast recovery.
Let lord shine his grace on us all the times.
Cheers!
I am very sorry to hear that :(. I have experienced the same thing here in Romania, and believe me i still can’t get over it… The hostpitals in Romania are disgraceful…
This blog, which I found after your trackback, scares me to death. Not just the blog, but the comments. From all over the world people are telling us that the private systems fall short, and the socialized systems are not better. To what degree was this always the case, and we should never abandon our loved ones to ANY system? We have a misplaced faith in (medical) technology that may be endangering our loved one.
Our prayers are always with you. I’m from India and moved to USA 5 years ago. I always had believed that the healthcare system in USA would be the best in the world. And indeed, USA seems to have the best technological advancements in the world. Unfortunately, the personal touch & compassion & care is missing in doctors here. The medical insurance companies and pharma manufactures are not at all ethical (I hear lots of horror stories from my frend who is a doctor here..).
You have to be completely educated, and try to know more about your medical issues before entering hospital (try google, webMd, etc to read more). If you are not aware of things, then you are most likely mis-treated. These days, for any medical issues, I go back to my town in India which seems far,far better..
I wish Americans rise against this and make good things happen.
I don’t know how this played out, having just found the post (in early July 08). I hope that the worst is over. It certainly points out that, even if we take responsibility for staying fit and healthy, sooner or later we the chances are better than even that we’ll encounter something like this. There certainly has to be a better way, and I’m sure a lot of bright and dedicated people (e.g., Andy Grove, formerly of Intel) are working on it all the time. Regardless of how the ‘system’ got this way, more people are becomming aware of the problems and challenges, and will eventually force improvements, some of which are happening quietly but surely. It can only improve; I’m not sure that it could get much worse given your experience.
Dear Nick,
I’m so sorry to hear about your father’s complications to his surgery and the horrible recovery period you spent in the hospital. I do wish him and your family all the best in the rehab. and hope he will have a successful recovery.
I’m writing a book about problems we encounter in the hospitals from errors to incompetent staff and would welcome your stories as well as those of your readers. Thanks so much and Good Luck!
Donna
yatesadelman@aol.com