Too Much Care
Some time ago, one of my elderly patients (who granted me permission to tell this story) began requiring blood transfusions for a condition known as ischemic colitis. Ischemic colitis usually occurs because of blockages present in the arteries that supply blood to the colon. Starved of blood, the colon’s inner lining becomes inflamed. But her arteries, it turns out, were normal. So we termed her ischemic colitis microscopic because we considered the blockages to be in the tiny arterioles. It was entirely unclear why in her these tiny arterioles should be blocked at all. At whatever level the blockage of blood flow occurs, though, the predominant symptom is the same: continuous bleeding from the colon.
If she’d been younger and healthier, we could have surgically removed her colon (though, ironically, if she’d been younger and healthier, she likely wouldn’t have had ischemic colitis in the first place). Unfortunately, given her age and frailty, neither I nor her family believed she would have survived such an operation. So, periodically, when she became severely anemic and felt poorly we’d transfusrf her.
It turned out to be extremely difficult to arrange this, however. Not many centers are equipped to transfuse patients as outpatients, and those that are have long waiting lists. So I would send her to a local ER. While this was arguably not the best use of medical resources, given that the only other option was to admit her to the hospital, it seemed the strategy that made the most sense. And it worked.
Until last time she required a transfusion. As was my habit, I called the ER before I sent her to alert the attending physician that she was coming. I explained why I was sending her and asked him if he could transfuse four units rather than the usual two. My rationale was simple: I wanted to prolong the interval between transfusions.
His response, while to some degree understandable, wasn’t what I’d hoped for: “We’ll evaluate her when she arrives.” Then he hung up rather brusquely.
I communicated my misgivings about my interaction with the ER attending to the family, telling them that if there were any trouble they should call me and I’d speak with the ER attending again. I didn’t hear back from them, so I called the next day. They had indeed transfused her, my patient’s daughter told me, though she didn’t know with how many units.
But they’d also told her they wanted to do a colonoscopy and run a number of other tests. When my patient’s daughter asked them why they wanted to do these tests when they’d already been done, the results had already been discussed, and a strategy had already been agreed upon with me, their answer was that they thought something might have changed.
I’d already spent many hours in discussion with the patient and her family regarding how aggressive we should be with her medically. Given that she not only has microscopic ischemic colitis but also dementia, that we couldn’t cure either condition, and that both conditions had a dismal prognosis, the patient, her family, and I had all agreed that our aim wasn’t to prolong her life but rather to keep her as functional and comfortable as possible.
For this reason, our posture had been to limit the number of interventions we allow her to undergo. The reason was simple: everything we do in medicine carries risk, and it’s hard to justify taking any risk in a patient who isn’t likely to gain significant benefit from almost any intervention we could think to offer, as was the case with my patient. Unfortunately, thinking through the nuances of risk and benefit carefully in a detailed manner takes time and isn’t something many physicians do, especially when they don’t know the patient well.
This explained, in my view, what happened to my patient. A gastroenterologist quickly decided she needed another colonoscopy without thinking through what the findings were likely to be, what interventions we could offer her, and what risks those interventions posed. He didn’t call me, the patient’s primary care physician, to discuss it either. If he had, I’d have told him what I told the family: “Do nothing to her besides give her blood.”
Unfortunately, this scenario is all too common in medicine today. Care is frequently fragmented because doctors don’t communicate well with patients and their families or with other doctors. As a result, healthcare resource over utilization continues to flourish. A colonoscopy would have added nothing to our understanding of my patient’s condition, likely wouldn’t have shown anything new that we could or would treat, would have suggested no new options for the condition we already knew she had, and would have put her at unnecessary risk for a complication.
The lesson to me as her primary care physician was clear: communicate, communicate, communicate. I must communicate with everyone involved in the care of my patients—not just with patients themselves and their families but also with every healthcare professional they encounter. Outcomes often hinge on the tiniest of details, and as a primary care physician, it’s my responsibility to know those details well enough to protect my patient from harm at the hands of the healthcare system itself. Not every patient has a daughter as savvy and as dedicated as my patient did, one who could (and did) throw herself in the path of a number of doctors who, though well-intentioned, were sloppy in their thinking and with their communication. Patients need both a family member able to act as a strong patient advocate and a good primary care physician: one with enough time to shepherd patients through the healthcare system with enough attention to ensure they receive care that hits the sweet spot—not too much, not too little. For as certain as too little care can be harmful, in many circumstances, so can too much.
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Sadly this is what happens all too frequently. It is most usually about fear of lawsuits and an area to get more money for the facility.
Kindness and empathy are what’s needed.
Indeed, the adage “less is more” applies here.
Well said, Alex.
To elaborate on what Alice said concerning the role of money, it seems that consolidation in the healthcare industry is a driving force behind the practice of ordering excessive tests and procedures. For hospitals, in many markets, it’s a case of “buy or be bought.” And once you have two hospitals, you have a “hospital system” which then becomes a bigger target. If you want to be the buyer, it takes money—lots of it. And you need to keep growing.
There are real benefits to hospital systems. But there are also real dangers. And mindfulness in boardrooms is a rare phenomenon.
Amen to that! Before my mother died at age 92 recently, she saw probably a dozen or more brilliant doctors in her last few weeks and it was a nightmare because nobody actually knew her and there was nobody “driving the bus.” It was expensive, ineffectual, and left me terrified for my own old age. What to do?
You might consider hospice. You can opt for either the “in-facility” option or hospice care in your own home. It’s covered by Medicare, provided your physician attests to a prognosis of less-than-6-months to live.
In the mean time, you might look into making a living will, aka an “advanced directive,” which specifies what you want done should you become incapacitated. Similarly, you could look into making a durable power-of-attorney to appoint someone to make decisions for you should you become incapacitated. Many states have online forms you can complete without having to consult an attorney.