Evidence Based Medicine--when it fails

Warning--some ranting
Disclaimer--this story has nothing to do with any facility I have ever worked for

OK, so, I have two friends--a woman about my age, we'll call her A, and her mother, who is, let's say, a bit older than we are, like about 90, and we'll call her B. B is roughly the size of a sparrow. They live in a city not far from me, about an hour's drive. B had a bad fall in January, owing to an unfortunate combination of ice and wind. A, being proactive, took B to the nearby hospital's emergency room to get checked out, make sure she hadn't broken anything, etc. B's O2 sats were low (oxygen level in her blood), and while it seemed she hadn't broken anything, tests revealed that she had a pulmonary embolism (blood clot in her lung). Things to note: She has a history of heart disease and is on a couple medicines for that, a beta blocker and something else, and also she had some really deep, painful bruises from her fall.

The hospital where she was seen has, like most hospitals I suspect, a protocol for treating pulmonary embolism. According to this protocol, she was admitted under the care of the hospitalist team, put on oxygen via nasal cannula (she only needed it for a day or so), and started on oral coumadin (a blood thinner, via pills, which takes a few days to build up to a level where it's working well) and intravenous heparin (another blood thinner, yes, the one that has recently been in the news for lack of quality control but that's yet another story) that was supposed to work while the coumadin built up. The plan was for these drugs to keep any more clots from forming and start dissolving the one that was in her lung, and for her to go home as soon as the coumadin had reached a good level in her blood. Blood thinners, we are told, are dosed by patient's body weight. There is no factor for age. Also, don't forget the fall and bruises.

I went to see her in a day or so. She was being switched from the IV heparin to a different drug that she could inject for several days at home, so she wouldn't have to stay in the hospital all week (she hates hospitals and was happy to give herself shots in aid of going home). Physical therapy wanted to get her up walking before agreeing to the release, but she was having pain and as I watched her gait it was abnormally tilted to one side. I didn't like this, and A had reported it to nurses, but the discharge planning process was moving along. Someone from pharmacy came to give her a mandatory "teaching" about her blood thinner. It was all verbal, and took about 15 minutes. Her eyes (and mine and her daughter's) glazed over after five minutes. As part of the training, the pharmacist described the symptoms of abnormal bleeding that occasionally occurs for patients on blood thinners. Huge bruises or growing bruises were two indicators.

The next morning we heard that she was not in fact going home, because her blood pressure kept dropping. Apparently there is a protocol for treating that, too, because she was put on IV fluids. Also, she was really sleepy. At some point of that day, it was decided that her existing heart meds (which had taken MONTHS to tune) must be responsible for her blood pressure drop, so these were discontinued. The blood thinners were continued. The fluids were continued. A reported that B had huge bruises blossoming from her fall. The following morning (24 hours after the blood pressure started dropping), it occurred to someone to take a look at her hemoglobin and hematocrit (blood tests that assess, indirectly, how many red cells you have and how good a job your blood is doing carrying oxygen to your body). The blood tests were not ordered "stat" (draw immediately), so sometime in mid-afternoon the lab tech showed up to draw the blood, and by late afternoon, the results were back. Both numbers were HALF what they should have been. This suggested bleeding somewhere in her body. Perhaps in her ABDOMEN, where she kept reporting pain.

It occurred to someone that perhaps a CT scan of her abdomen would be informative. The CT was ordered and showed internal bleeding in three locations. (Remember the DEEP BRUISES? Do you know what bruises are?? They are areas of bleeding from an injury, and you want the bleeding to, oh, I don't know, CLOT at some point. Blood thinners do not help this process. To put it mildly.) At this point the proverbial brown matter hit the proverbial fan. Blood products were ordered stat, blood thinners were discontinued, and emergency surgery scheduled. I was never able to find out exactly what was done in surgery that night but a part was the installation of a "basket" in one branch of the vena cava to prevent clots that might break off elsewhere from further damaging lungs and heart. She came back from surgery about the time her poor daughter, A, who had been staying with her about round the clock, developed a virulent GI bug. A had to go home. Her best friend and I agreed to split shifts and stay with B the following day.

Poor B had a rocky night. She kept reporting pain and increasing feeling of tightness in her abdomen, and for whatever reason the night staff decided she was having heartburn (that is, when they were not offering tylenol). She was vomiting the heartburn meds and the tylenol. Finally, in the early morning, two things happened: someone checked her blood pressure and it was high. She told that someone that she gets elevated BP readings when she is in PAIN. Also, another someone decided that really tylenol is NOT sufficient for relief of pain due to INTERNAL BLEEDING and put her on a morphine PCA (patient controlled analgesia, pain pump, whatever, which requires the patient to be alert, oriented, able to remember instructions, etc., in order to get pain relief. B is 90, had been very, very sick now for 4 days. She had no clue how to work the PCA.) I arrived just as B's nurse came in to bolus her with an IV dose of Lasix for her high blood pressure. She'd had one dose of morphine which had provided effective pain relief (this, by the way, does suggest the pain was organ pain from bleeding, not heartburn). But she was looking weary and painful. I asked if she had pain, she said yes, I reinstructed her on the PCA, and she gave herself another dose. I was hoping she could rest, although not optimistic because the Lasix, had she been hypervolemic as suspected, should have made her need the bathroom pretty quickly.

20 minutes after the Lasix, it was CNA rounds time, and her CNA came in and took her BP. It was 90/40 (for the record, that is not high. It is LOW. As if, say, a person were bleeding.) I asked the CNA to re-take the BP and expressed my concern about the Lasix bolus in light of the reading. The CNA did a manual BP, no change, and tried to tell me the Lasix was a grand vasodilator and 90/40 wasn't really all that bad. I asked the CNA to report the reading to the nurse. The CNA rolled his eyes at me. Meanwhile, I kept trying to settle B to rest. Her room was right outside the nurse's station because she was a fall risk (true; 90 and disoriented from LACK OF OXYGEN and pain will buy you that, I agree). It was really noisy. I kept closing the door. Every person who came into the room left it OPEN on departure. And there were lots of them. She did get a little sleep before lunch. Which, when it arrived, contained enough food for an army. What tiny appetite she had disappeared, overwhelmed by the sight of so much food.

Right after lunch, A's best friend arrived to change shifts. B's forehead started furrowing again and she agreed, when asked, that she was having pain. I instructed both her and her new "sitter" on how to use the PCA, and she gave herself another dose of pain medicine. Shortly thereafter the nurse came in and announced that the PCA pump would be discontinued because she was using so little medicine she didn't need it and henceforth she could just call the nurse when she needed medicine. In vain did we protest that, without someone sitting with her, she could not manage to use the pump and we doubted she'd be competent to call the nurse, and she did not need to be in pain. He rolled his eyes at us. Shortly thereafter the transport team came to take her for a repeat CT. They unplugged the PCA and wheeled her out in a wheelchair. She was back 20 minutes later. They put her back in bed and left the PCA, unplugged, by her bedside. I'd had about enough so went out to ask the nurse to plug in the PCA. (I didn't remember where it was plugged in, and all the plugs were color coded, who knew where it should go??) He rolled his eyes at me, and said, "It HAS a backup battery, you know" (how would I have known THAT?) but did come in and plug it back in.

A little while later, I had to leave for work. A's best friend stayed at the bedside. B got two more units of blood product (packed red cells). I called later to see if the results of the CT scan were back. They were. It was "unremarkable." What on earth did that mean, I asked A's friend? She had no clue. Did it mean, unremarkable for a patient actively bleeding? Unremarkable compared to normal? Unremarkable as in, no changes from the day before? We had no idea at all. At least B was feeling some better from the morphine, A's friend was there to watch her and make sure that nurses knew if she was having pain, etc.

The next day it was decided that the morphine was causing B's blood pressure to drop too low. She was given a different medicine. Thankfully, it worked. At some point, staff reported to A that B's bleeding did appear to have stopped. And apparently they decided that blood thinners were not a good choice for B.

B made it out of the hospital alive. Luckily her heart failure did not get worse in the days without her heart meds. She did contract A's gastrointestinal virus and was so sick that her (own) doc wanted her back in the hospital but she refused to go and got better on her own. Luckily, also, she has not shown any signs of adverse reactions to her four transfusions. Her pain has been slow to resolve but she is definitely feeling better.

In the eyes of the hospital, this was probably a success. She was given a standard treatment, she had some complications, and these were addressed. New protocols were started when needed. However, in my eyes her stay left a lot to be desired. For starters: the protocol for pulmonary embolism was apparently not designed for someone with trauma/injury, but this was not addressed. B was not seen by the same team on successive days (what with the hospitalists' rotation schedules, and nurse staffing, don't let me go there). There did not seem to be any one person who was responsible, not for the protocol checklist, but for taking care of this patient. When B's blood pressure dropped, logic would demand that someone say, what has changed for this patient? Oh, we started her on blood thinners, wonder if that's responsible? rather than deciding that the heart meds, on which she had maintained normal pressure for, say, MONTHS, must have been the culprit and discontinuing those. The "training" B received re: the blood thinners included watching for pain and increasing sizes of bruises. Although she had these, and they were reported by B's daughter A, apparently no one understood them as signs until they'd been going on for 24 hours. When someone did begin to ask questions, the bloodwork was ordered with normal priority. So the bleeding kept on for way longer than it needed to. The morning after surgery, B stated clearly that pain causes her to have elevated BP readings. No one re-took her blood pressure after the pain relief was started--they just gave Lasix, which turned out to be unnecessary if not contra-indicated. And, the choice of a PCA for an elder who is woozy is not appropriate. Scheduled pain meds, please, and followup with the patient.

But, hey, there are protocols. And they work wonderfully and, I am sure, in a cost-effective manner, for patients who are young, alert, have no pre-existing health conditions, and able to advocate for themselves.

Here's the scariest thing yet: I was telling this story to a friend whose mother had a number of medical crises before her eventual death. I mentioned the pulmonary embolism and the protocol, and she said to me, "Don't even bother with the rest. She got too much coumadin and had internal bleeding and almost didn't make it, right?" So--this protocol has a known problem. Her mother's experience was years ago. Has there been any change? Guess not. I suspect it works enough of the time to be cost effective.

I intend to modify my advance directives to note that if I am ever found responsive near B's hospital I should be left where I am. Don't take me there, leave me in the road or wherever. The outcome will be the same and it will cost a lot less money.

Here's the thing--we somehow must not see our vulnerables, our elders and the sick among us, as deserving of attentive care, if we simply subject them to treatments that appear to have been developed from working with younger, healthier patients, those who present with only the problem being treated and who can advocate for themselves. To me as a chaplain, this is an enormous problem on many levels, including perhaps at core the spiritual. Efficiency and cost control replaces care of persons, and it works well for those in the most powerful class/age group, the decision-making class/age group. Those on the margins are those most likely to have complications. Not OK, not in the justice tradition of Judaism or the tradition of Christianity, despite the fact that "Christian values" are supposed to be important in this country. Let's think about that once in awhile.