A blog on the Homestead.org website was recently brought to my attention which details both the trials and triumphs of a patient and her husband. It was written by the patient’s husband, between long commutes to and from the hospital, in late November and December of last year. I was asked (or rather challenged, as stated in the e-mail accompanying the link) to discuss what patients should, and can, do in scenarios similar to this in order to protect their health and lives. I take up this challenge with equal amounts of excitement and trepidation, because, first and foremost, I see myself as an educator, and this unfortunate, but not uncommon, example serves as a potent case study with numerous teaching points, both positive and negative. However, I must admit that I have also witnessed, and tried to be heard by the medical establishment – as a patient, a relative’s advocate, and as a physician – with varying degrees of success.
The lack of communication and listening skills that has permeated the modern medical field was actually one of the initial impetuses that prodded me to become a physician. At the time, I was about 14 or 15 years old, and had hurt my knee during a soccer game. I went, with my parents, to an orthopedic surgeon for recommendations regarding treatment. After spending approximately 5 or 6 minutes recounting my story, the surgeon examined my leg, which consisted of rather uncomfortable twisting and yanking motions, but without any explanation of what he was testing for or what the findings were during the exam. Being a farmer, country boy, and all-around “tough guy” (I only went to the doctor because my knee had an unfortunate habit of popping out at the most inopportune times, like when I was playing basketball, my true passion), I endured it without so much as a grimace. After this seemingly brief encounter, the surgeon stated that I had a torn ACL (a ligament holding the knee together), that I required surgery, and then proceeded to schedule me for a month later. I was VERY hesitant to undergo surgery without any imaging first, and both my mother and I asked about obtaining X-rays or some other imaging in order to visualize the supposed damage. He stated that it was unnecessary, and started to become a little frustrated with our questions. At that point, my parents decided to obtain a second opinion. We visited a second orthopedist a couple weeks later. After discussing my symptoms, which this doctor seemed to care about, and having a more thorough examination (which, I have to admit, was about as uncomfortable as the first examination – but since he was explaining what he was doing, and what he was looking for with each manipulation, put me at much greater ease), it was decided that I did not require surgery at that point in time (but perhaps later on in the future), and I could do quite well with a knee brace and strengthening exercises.
I hear the same frustration and lack of discussion with the medical staff in the aforementioned blog. I have reviewed the entire blog, and I would like to summarize the story, interspersed with several points that I hope you will find educational. However, for access to the original data (which I always recommend in both scientific research, as well as medical review), here is the web address: http://forums.homestead.org/ forum_posts.asp? TID=19819& title= sandpainter. The documentation of events begin on Thanksgiving eve, when Ms. S (the patient – these are my abbreviations, and I use them to obscure individual identities, both out of respect for the individuals, and by personal habit and training in regards to presenting cases) was readmitted, and then transferred for higher level medical care, due to the recurrence of abdominal symptoms. The symptoms were thought to be related to a hernia (an outpouching of intestine) near a previously reversed ileostomy site (which takes part of the small intestine and externalizes it, usually after significant bowel surgery to remove a portion of the intestines for various reasons, and where gastrointestinal motility is reduced, in order to give the bowel, and patient, time to heal) causing obstruction, and were initially relieved with a nasogastric tube (a plastic tube inserted through the nose into the esophagus and ending in the stomach, which, when hooked up to low-pressure suction, can remove excess gas from the bowels and help treat partial bowel obstructions) and pain medications.
So, in the initial phases after the transfer, it appeared that the situation was under control, and that Ms. S’s condition would be treated quickly. In the blog entry, Mr. S (the patient’s husband) mentioned that the physicians at the original transferring facility left something to be desired (to put it diplomatically), but that the medical staff, which included the doctor and nurses at the receiving hospital, were courteous, efficient, and proficient. From Mr. S’s account, he and his wife had been in and out of the hospital several times in the recent past. His wife had suffered a complication from an errant IV insertion at the transferring hospital in the past (prior to the start of the blog in this forum), which developed a clot and required chronic treatment with a powerful anticoagulant (warfarin). She also inadvertently received medicines after that experience which worsened her clotting problem and forced her to be readmitted to the hospital, also prior to the start of this blog. Both Mr. and Ms. S had a lot of reasons to be tired and upset with the medical establishment. The husband was still optimistic, however, based on conversations with the surgeon at the new hospital, that the procedure to treat the hernia would be without complication and that his wife would be able to leave in “two or three days.”
The initial presentation seems rather straightforward. To my physician’s mind, I would like to know a little more about Ms. S – her age, the symptoms that brought her back to the hospital for evaluation (I am presuming partial small bowel obstruction in the setting of relatively recent abdominal surgery and a hernia, which would entail stomach pain, nausea, with or without vomiting, and a bloated sensation), the events surrounding the previous hospitalization, including the need for an ileostomy (a major surgery), the clotting disorder which required warfarin, what medications she was treated with, and the ones that she was on when she was transferred to the new hospital, as well as any reactions to medications, now or in the past. A special concern in this particular case is the mention of warfarin – which tends to induce bleeding – especially in light of the fact that she was being evaluated for surgery.
Now, I would like to present an analogy at this initial phase, to help understand a little more of my questioning, and to demonstrate the importance of asking questions and learning more about hospital care. I have been thinking about this analogy for a couple of months now, and when I read through this case, it kept coming back to me. Please bear with my description. My wife and I recently changed the tires on her car, before winter arrived. It was the responsible thing to do, and we knew that it needed to be done, but I was not as familiar with her car as I should have been. It is one of those foreign sport edition models, with the skinny aluminum wheels, and specialized tires. It had also been in a front-end collision, which required some major restorative work.
Needless to say, I went into the ordeal woefully unprepared and uninformed. The tires were expensive, to be sure, but the surprise came when the mechanic came back and said that the wheels were misaligned and that one of them had a dent in it. We decided to have the wheels realigned, but left the dented rim for another day. When we drove away, the car had a noticeable wobble in the steering wheel, but we wrote it off. That is, however, until my in-laws rode in the back to church that Sunday – at that point, the wobble became a full-blown shuddering of the back end of the car! My wife and I took the car back to the garage the following two Saturdays, sitting there, wasting precious hours of our lives, as the mechanics examined our vehicle, found several more bent rims, told us that it was our fault, and that we should not have had the wheels realigned, because the original “misalignment” was probably to offset any damage from the front-end collision.
In the end, the car still wobbles, but it is not noticeable most of the time, and we still have the dented rims. But there is also the frustration and anger at the garage and the mechanics for not divulging more of this information sooner. I also feel responsible and frustrated with myself, because I did not do my homework beforehand. I thought that it was going to be a routine tire change, and that, aside from the several hundred dollars paid and a Saturday wasted, life would go on as planned.
Now, I realize that the medical field and automotive problems are vastly different. Please do not think that I am drawing a one-to-one correlation between major surgeries or medical illnesses and my stupid poor planning with my Honda Fit. The stakes are so much higher whenever anyone enters the doors of a hospital, because life and health are at stake. And, as the old saying goes, if you do not have your health, what do you have? The thought that struck me on that second and third Saturday, however – as I sat in the waiting room of that garage reading the same magazine from 2006 for the third and fourth time – was that education and preparation would have saved me much of the frustration and heartache that I was experiencing. Granted, it would not have kept the rims from being bent, but I would have thought twice about realigning the tires, for example. I also realized that a lot of people do not know as much as they need to about hospitals and all that goes on within them. It is as foreign to them as the waiting room of that garage was to me. Knowledge is truly power, especially in the medical field. Knowing what to expect, and knowing about yourself or your loved one (your body, your medical history, your medications, allergies, surgeries, travel, etc.), even if you do not know all of the fancy jargon, will go a LONG way to help protect you in a foreign setting.
But we will talk about that more in a little while. Now, let us get back to our case study. Ms. S had abdominal surgery to remove part of her colon on Thanksgiving morning. Based on Mr. S’s recounting of his conversation with the surgeon (talk about a third-hand account!), the bowel near the ileostomy site was “gray,” “deteriorating,” and thought to be the cause of the “serious blockage after the former ileostomy.” Apparently, there were also a lot of intestinal torsions or, as Mr. S describes it, “[Ms. S’s] intestine was tangled up pretty bad, I guess, the doc said it was almost tied in knots.” One day after the surgery, Ms. S was in the ICU, better but with a high heart rate. Mr. S hoped that his wife would be able to go home after the weekend (“Sunday, Monday maybe.”) Subsequent posts by well wishers stated that “[s]ounds like she’s in good hands” and “…we are so glad that the surgery went well and that [Ms. S] is feeling better as a result.”
She was moved to a non-ICU “floor” bed (suggesting that she required less acute medical care and monitoring) on Sunday, November 28. Mr. S mentioned that there was a lot of blood that leaked through the abdominal incision site. She was also still on “pretty potent” pain meds. It was noted, however, that “[s]he’s definitely better today than on Friday.” The next day, Mr. S wrote a short blog stating only “Back in ICU. Won’t go into it right now, but not hospital fault.” However, as we find out later, there was some concern for possible withdrawal symptoms, potentially alcohol, which prompted Ms. S to be transferred back to the ICU. There are also questions later on by Mr. S and the blog participants regarding the medical staff and their actions that might have led to Ms. S returning to the ICU.
For right now, however, I do not know how the surgeons presented the procedure to Mr. S, or why he thought that it would only be a weekend excursion. But, in Ms. S’s case, it was already known that she has had a complicated medical history, previously requiring a major surgery (an ileostomy) and anticoagulation. She just had a portion of her bowel resected for probable ischemia causing obstruction – a major surgery in itself. She required intensive care monitoring after the surgery, and was on pain medications to help alleviate her symptoms. All of these strike me as potential red flags, but not only in retrospect, which I have the luxury of thanks to the blog forum.
Here are a couple of points that may help you in the future, if, God forbid, you find yourself or a loved one in a similar circumstance. Number one, always remember that any surgery is a major medical intervention and should not be taken lightly. Any condition that requires you to be sedated or fully anesthetized so that something can be corrected or removed from your body is serious. Especially if you require ICU care after the procedure. They check vital signs continuously to watch for any subtle change in temperature, heart rate, blood pressure, breathing, urine output (which usually requires a catheter in your bladder), and any other number of invasive monitoring. It is also a relatively safe guess that someone requiring such continuous monitoring will not usually be discharged from the hospital directly from the ICU, or within several days.
There are exceptions to every rule, but thinking along the lines that the stay will be longer rather than shorter will steel you against erroneous expectations. Do not expect to get a lot of sleep in the ICU either, or in the hospital in general, which I hear commented on frequently by a lot of patients and their relatives. I know, it is harsh, and sleep deprivation comes with its own set of problems (trust me, I know, as experienced from both sides of the fence!), but any change in one of these parameters could be the harbinger of something much worse, like internal bleeding, rampant infection or sepsis, heart attack or even stroke. For example, the fact that Ms. S was bleeding through her incision site could have meant that she was bleeding internally, and it should not have been written off as the result of excess blood from the transfusions. She needed to be monitored closely, perhaps with serial blood draws to trend her hemoglobin and hematocrit, to see if she was in fact becoming anemic from her blood loss.
So, if you have any question about your or a loved one’s condition, PLEASE ASK QUESTIONS, and PLEASE KEEP ASKING QUESTIONS until you get an answer. I would recommend trying to be as polite as possible (because you get more flies with honey than with vinegar, but I have no idea why you want excess flies –sorry, just a poor bit of humor), but be persistent, and if you feel that your well-being or a loved one is in danger, DEMAND to be heard. And remember that you are your loved one’s advocate in the hospital when they cannot make their wishes or feelings known. As Expatriate (a blog forum participant) stated on November 30 (and for which I cannot find a better way to phrase it): “[she] needs you [to] have her back while she’s not at 100%.” Well said! Pleasantries have their place, but not when someone’s life is at stake.