The title above is not quite complete. The full title for this piece is: How Hospitals Conspire to Kill Our Loved Ones and Conceal It Even from Themselves. It was a bit too long.
The distinction, though, is important. This is not about a nefarious conspiracy of malevolence and willful deception. Rather, it is about an insidious conspiracy of benevolence and unwitting delusion. It is about a system populated mostly by genuinely caring and often highly expert people, that nonetheless devolves into routine and dangerous dysfunction.
The clear and present danger to our loved ones and ourselves is less the occasional failure of the system to meet standards, and more the constant application of a substandard standard, regressed to the mean of its own frequent failings. We all know the adage that a lie, oft-repeated, becomes the “truth,” albeit a pernicious truth. The hospital corollary is: a lapse oft repeated comes to define the standard of care.
Over the past week or so, I have had a loved one in the hospital. I won’t say which loved one, and only note this is someone very close to me. I won’t say what hospital, or name the condition either. This is, indeed, an indictment - but not of any given provider or facility. My indictment is of the system at large, so no one need be named, let alone blamed. In fact, there are many individuals in the mix here for whom I have only deep gratitude.
My loved one is an “older” person, in her upper 70s. She is, however, or at least until now has been, quite healthy and vital and very active. Her series of nearly lethal, unfortunate events was set in motion by an elective orthopedic procedure in the service of that vitality and those activities. She still loves to bike, ski, and to a lesser extent (especially when hills are involved), hike.
That procedure went well, but turned into a case of “the surgery was a great success, alas the patient…” My loved one had a significant and unpredictable complication, likely related to an occult vulnerability of the GI tract, and almost 80 years of wear and tear on all organ systems. That complication, in turn, induced yet another, involving the blood and bone marrow, for much the same reasons.
To this point, the only “systems” involved in my loved one’s misfortune were her own organ systems. But though significant, those problems were readily overcome by proper care, tincture of time, and the critical asset of good health at baseline. But it was not to be.
Receiving intravenous fluid per protocol in a corner room far from the nurses’ station or anyone’s frequent attention, my loved one was put into fluid overload and pulmonary edema, a potentially lethal state and a serious trauma to all of the organ systems working to recover, along with others uninjured until now. She was discovered in this condition in the morning not by the medical staff, but by a family member. We had made the mistake the night prior, thinking she was fairly stable, of not having a family member stay overnight with her.
Subsequently, receiving a diuretic in the ICU to correct the fluid overload, our patient was put into a state of acute fluid depletion, dropping her blood pressure to a potentially lethal 40mm Hg. This was discovered by another family member, who spent that night in the hospital, and called me as soon as she saw the ominous trend.
Of course, a blood pressure that low triggers alarms in the ICU, and would have resulted in a response by the care team- at some point. But family, not the alarm, got their attention immediately. This is not because of lack of human decency, but because hospitals are routinely under-staffed, the staff on hand are overworked and overwhelmed, and all concerned have “alarm fatigue.” There are alarms sounding in the ICU at almost all times. Like the boy who cried wolf, they are prone to induce not the intended emergency response, but selective inattention.
There is really just one degree of crisis beyond a blood pressure of 40: full-blown cardiac arrest. My prediction is that were it not for family at the bedside, that’s just where this episode would have gone.
This, though, is the disturbing part: everyone would have been OK with that. Cardiac arrests in this context- older, sick, hospitalized people with multiple problems- happen all the time. They figure in the standard of care; they don’t stand out against a background they help create.
Had my loved one arrested, the code team would have arrived and attempted to resuscitate her. They would have succeeded, or failed. Had they succeeded, she would now need to recover not only from the established problems, but from an arrest, intubation, multiple drug exposures, and probably a few cracked ribs into the bargain. All the while, the system would be congratulating itself for saving her life- blithely forgetting that it had caused the life-threatening fluid overload that resulted in the need for diuresis that resulted in the hypotension that resulted in the arrest that invited them to swoop in and “save” her- in the first place.
And, had they failed to resuscitate her, that would have been sad, and tragic, and…perfectly acceptable for all the same reasons.
A day or so later (they blur together under these conditions), there was another episode of dangerous and utterly unnecessary fluid overload. There was a potpourri of less acutely dangerous but nonetheless maddening lapses. Every avoidable trauma delayed the recovery of already injured organs, compounded the list of established problems, and invited consideration of more treatments- each with its own associated risks.
We defended against these as best we could by having at least one family member at the bedside 24/7, with constant access to me and another physician in the family to interpret and advise, when we weren’t the ones at the bedside. We are expecting our loved one to recover fully, a little bit because of the system-and at least as much in spite of it. We may leave my loved one’s story there.
While it is the intimacy of this experience that goads me to write now, I have seen this- and ranted about it- many times over my 25-year clinical career. On at least two occasions, I’ve played the role for someone else’s loved one that I adopted this time on behalf of my own. At least twice over the years, I effectively moved into the hospital to keep constant watch over a patient the system’s routines were very likely to kill. That both survived to discharge ranks very high on my list of reasons for passing pride.
This same system – overwhelmed, understaffed, and itself a victim of misguided priorities- is an inadvertent threat to you and your loved ones needing in-patient care as well. I see five levels of progressively greater defense against its deficiencies.
1) Relentless familial vigilance. The squeaky wheel famously gets the grease, and no one can squeak more effectively about a patient’s immediate needs than a loved one at their side. While it helps to have some medical expertise in the ranks, constant attention and persistent advocacy go a long way.
2) Patient-centered care. This model, involving everything from staffing to architecture devised to accommodate the needs and comfort of patient and family, is unfortunately still more exception than rule, but that is slowly changing. My own hospital is an epicenter of this culture change, and I have seen up close- and from both sides of the bed- how powerfully, and favorably, it can alter the acute care experience. It should become the standard of care.
3) State-of-the-art virtual care. I have been privileged to an up-close view of where virtual care is going, and I was very impressed. Continuous, video access to teams of experts monitoring clinical data filtered by sophisticated algorithms so that what most warrants attention always gets it- can do even more than family at the bedside. In my loved one’s case, this system would likely have detected, and corrected, the falling blood pressure long before it became critical. Expect, welcome, and encourage the propagation of virtual care.
4) All of the above. The above elements can be combined, and collectively would provide a very robust defense against the liabilities of under-staffing, over-specialization, distraction, and the perils of inadvertent omission, and injudicious commission.
5) All of the above in the context of a healthcare system actually about health, and care. Though we rail routinely about the woes of serious chronic disease, our culture actively propagates them for profit. This, obviously, is unnecessary- but culture change is needed to redress it. In the current context, our so-called “health care system” is really a system about disease, and money rather than health and caring. A system that actively promotes health with lifestyle, and protects health with preventive medicine, is possible any time we choose. Such a system would result in many more healthy, and many fewer sick people in our society. Resources freed up accordingly could allow for a much-enhanced level of care for those who do get sick. The elements above, conjoined to a culture of wellness, could produce a stunning result: dramatically less serious illness in the first place, and all but unfailingly meticulous, attentive, timely care for those who do succumb. In case it is not implicitly obvious, the current threats to the Affordable Care Act take us in the opposite direction entirely.
We are told that medical error is the third leading cause of death in the United States, an alarming and sobering figure. But here’s the far more alarming fact: that number does not reflect the deaths caused not by overt error, but by the deficiencies native to the standard of care. I don’t know how often patients die of what seems like the inevitable consequence of one complication precipitating the next, when in reality that cascade is aided and abetted by the standard of care - as it has been in the case of my loved one. I don’t know how often, but I’ve seen enough to know it is far, far too often.
Stated simply, such mundane calamities populate the standard of care that makes such calamities mundane. Against a backdrop of bad outcomes in this context, a bad outcome is an expected reality, rather than the reality check it ought to be. To be clear, very sick people will die in hospitals even when care is unassailable. But the standard of care routinely fails to approximate that state. Since it is standard, however, its failings go unnoticed.
This is my warning to you, and my challenge to the system. The standard of care regresses to the mean of innumerable, unnecessary lapses. The standard of care is a veil over its own potentially lethal inadequacies. Some of these are much about staffing, and those liabilities in turn reflect our culture’s misguided priorities. Some, though, are about misguided decisions to do too much, or do too little, or do what is routinely done and assume all will be well –not for want of expertise, but at times because of the opposite: ever more specialized expertise, resulting in a famous variety of blindness to the big picture. Organs are treated, even as patients languish.
Hospitals kill our loved ones at times, despite hard work and good intentions, and conceal it even from themselves. It hides in plain sight; it is business as usual. It is the business of each of us to do all we can to defend our loved ones from that. It is the business of all of us to change it.
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