The human capacity to deny reality is one of our defining characteristics. Evolutionarily, it has often served us well, inspiring us to press onward against long odds. Without denial, the American settlers might have aborted their westward trek somewhere around Pittsburgh; Steve Jobs might thrown up his hands after the demise of the Lisa; and Martin Luther King’s famous speech might have been entitled, “I Have a Strategic Plan and a Draft Budget.”
Yet when danger or failure is just around the corner, denial can be dysfunctional (see Karl Rove on Fox News), even suicidal (see climate change and Superstorm Sandy).
Healthcare is no exception. Emerging evidence suggests that patients and their surrogates frequently engage in massive denial when it comes to prognosis near the end of life. While understandable – denial is often the way that people remove the “less” from “hopeless” – it can lead to terrible decisions, with bad consequences for both the individual patient and society.
First, there is evidence that individuals charged with making decisions for their loved ones (“surrogate decision-makers”) simply don’t believe that physicians can prognosticate accurately. In a 2009 study, UCSF’s Lucas Zier found that nearly two-thirds of surrogates gave little credence to their physicians’ predictions of futility. Driven by this skepticism, one-in-three would elect continued life-sustaining treatments even after the doctor offered their loved one a less than 1% chance of survival.
In a more recent study by Zier and colleagues, 80 surrogates of critically ill patients were given hypothetical prognostic statements regarding their loved ones. The statements ranged from “he will definitely survive” to “he will definitely not survive,” with 14 statements in between (including some that offered percentages, such as “he has a [10%, or a 50%, or a 90%] chance of survival”). After hearing these statements, surrogates were asked to interpret them and offer their own survival estimates.
When the prognosis was optimistic (“definitely survive” or “90%” survival odds), surrogates’ estimates were in sync with those of the physicians. But when the prognosis was pessimistic (“definitely not survive” or “he has a 5% chance of surviving”), surrogates’ interpretations took a sharp turn toward optimism. For example, surrogates believed that when the doctor offered a 5% survival chance, the patient’s true chance of living was at least three times that; some thought it was as high as 40%. Remarkably, when asked later to explain this discordance, many surrogates struggled. Said one, “I’m not coming up with good words to explain this [trend] because I was not aware I was doing this.” The authors identified two main themes to explain their findings: surrogates’ need to be optimistic in the face of serious illness (either as a coping mechanism for themselves or to buck up their loved one), and surrogates’ beliefs that their loved one possessed attributes unknown to the physician, attributes that would result in better-than-predicted survival (the “he’s a fighter” argument).
Last year I graduated from nursing school and began working in a specialized intensive care unit in a large academic hospital. During an orientation class a nurse who has worked on the unit for six years gave a presentation on the various kinds of strokes. Noting the difference between supratentorial and infratentorial strokes—the former being more survivable and the latter having a more severe effect on the body’s basic functions such as breathing—she said that if she were going to have a stroke, she knew which type she would prefer: “I would want to have an infratentorial stroke. Because I don’t even want to make it to the hospital.”
She wasn’t kidding, and after a couple months of work, I understood why. I also understood the nurses who voice their advocacy of natural death—and their fear of ending up like some of our patients—in regular discussions of plans for DNRtattoos. For example: “I am going to tattoo DO NOT RESUSCITATE across my chest. No, across my face, because they won’t take my gown off. I am going to tattoo DO NOT INTUBATE above my lip.”
Another nurse says that instead of DNR, she’s going to be DNA, Do Not Admit.
We know that such plainly stated wishes would never be honored. Medical personnel are bound by legal documents and orders, and the DNR tattoo is mostly a very dark joke. But the oldest nurse on my unit has instructed her children never to call 911 for her, and readily discusses her suicide pact with her husband.
You will not find a group less in favor of automatically aggressive, invasive medical care than intensive care nurses, because we see the pointless suffering it often causes in patients and families. Intensive care is at best a temporary detour during which a patient’s instability is monitored, analyzed, and corrected, but it is at worst a high tech torture chamber, a taste of hell during a person’s last days on earth.
I felt sad when I went to make rounds in the hospital.
One of my patients, a colleague, had been readmitted in poor condition for recurrence of a primary lung sarcoma.
I spent a few minutes examining Dennis and chatting. He then, with a quizzical look, said, “Jim, I’m going to have to sue you. I know I’m dying. My wife Alice and the kids are still pretty young.” He saw my look of surprise and added, “You know, I don’t have much life insurance or other very significant funds for them to live on. It’s nothing personal. I know you’ve given me good care, but my wife is upset and tends to blame you for the outcome. I guess the hospital and others will be named.”
There wasn’t much more for me to say at the time except, “Dennis I can find another attending for you if you’d like.” He replied, “No, I want to stay with you.”
Dennis was a well liked family doctor. About five years earlier a “coin lesion” was discovered on a chest X-Ray. This 2cm spot in the right upper lobe had a smooth rounded border and didn’t contain calcium. A CT scan showed no enlarged lymph nodes and no other spots elsewhere. A needle biopsy of the spot was not diagnostic. We knew the spot was new because an X-Ray five years earlier was normal. He hadn’t traveled to an area where Valley Fever or other fungal infections were common.
So begins this New York Times essay by Peter Bach, MD, where he talks about the inadequacy of resource use at the end of life as a policy metric. Now, I am not very fond of policy metrics, as most of you know. So, imagine my surprise when I found myself disagreeing vehemently with Peter’s argument. Well, to be fair, I did not disagree with him completely. I only disagreed with the thesis that he constructed, skillfully yet transparently fallaciously (wow, a double adverb, I am going to literary hell!) Here is what got me.
He describes a case of a middle-aged man who was experiencing a disorganized heart rhythm, which ultimately resulted in dead bowel and sepsis. The man became critically ill, the story continues, but three weeks later he went home alive and well. This, Dr. Bach says, is why end of life resource utilization is a bad metric: if this guy, who had a high risk of dying, had in fact died in the hospital, the resources spent on his hospital care would have been considered wasted by the measurement. And I could not agree more that lumping all terminal resource use under one umbrella of wasteful spending is idiotic. Unfortunately, knowingly or not, Peter presented a faulty argument.
The case he used as an example is not the case. Indeed it is a straw man constructed for the cynical purpose of easy knock-down. When we talk about futile care, we are not referring to this middle-aged (presumably) relatively healthy guy, no. We are talking about that 95-year-old nursing home patient with advanced dementia being treated in an ICU for urosepsis, or coming into the hospital for a G-tube placement because of no longer being able to eat or drink. We are talking about patients with advanced heart failure and metastatic cancer, whose chances of surviving for the subsequent three months are less than 25%. And yes, we are also talking about some middle-aged guy with gut ischemia, sepsis and worsening multi-organ failure whose chances of surviving to hospital discharge are close to nil; but in his case, instead of being clear from the beginning, the situation evolves.
On a Saturday around noon, an 85-year-old woman was brought by ambulance to the Emergency Department with severe abdominal pain. She was confused and unable to provide any medical information. Her X-rays showed marked accumulation of abnormal air in her abdomen, a dreaded sign of a perforation in the intestinal tract. Her blood pressure was quite low, requiring treatment with intravenous medications. As the general surgery intern on call, I was asked to see her.
A physical examination showed her abdomen was rigid and extremely tender, which confirmed this was a surgical emergency. Laboratory testing indicated a serious infection, likely the result of intestinal contents leaking into the abdomen, as well as mild kidney injury. Multiple efforts to reach either family or friends by telephone were unsuccessful, and a conservator or someone with durable power of attorney could not be identified to provide informed consent. The patient clearly needed surgical intervention, so two surgeons wrote notes documenting the need to bring her immediately to the operating room as this was a “life-threatening emergency situation.”
During a 6 hour procedure in the operating room, she underwent repair of a benign perforated ulcer in her stomach. She was brought to the recovery room with the breathing tube in place only because it was late in the evening, with the plan to remove the breathing tube promptly in the morning. I saw her during a post-operative check around 9pm, and all seemed to be improving. She was now requiring much lower doses of medications to maintain an adequate blood pressure, and her kidneys were recovering with a good urine output.
About an hour later, I was notified by the nurses that the patient’s children had arrived. They demanded immediate withdrawal of support. One produced paperwork indicating that she was her mother’s durable power of attorney. She stated that her mother would never have wanted to be “on life support, intubated, and in need of dialysis or blood pressure medications to artificially maintain her blood pressure”.
This was sensational when I saw it live at TEDMED and it’s even more amazing second time around. Sekou & Steve do 18 minutes of beat poetry & intensity–“we know when life ends, but when does death begin!