I MET her in 2011, during my first few weeks as an intern in internal medicine. She was not the kind of patient who had appeared in my textbooks. She had been admitted from rehab after expressing an intent to take her own life, and I soon learned that her body was as troubled as her mind.
She had heart failure from a condition called hypertrophic obstructive cardiomyopathy, in which an overgrown muscular wall keeps blood from properly flowing out of the heart. She might have been born with it, or acquired it from years of neglected high blood pressure. Her blood pooled in her swelling legs and seeped into her lungs, causing her to wheeze constantly. She was in her late 50s, but seemed much older.
While learning her medical history, I also got to know her. A former artist, derailed by addiction, she had become alienated from her career and her family. She had let the problems in her heart fester and had never received consistent treatment.
At this point, she wasn’t a suitable candidate for heart surgery. But I felt there was still hope. A procedure called alcohol septal ablation could potentially reduce her symptoms. It involved injecting alcohol into a blood vessel to strangle the blood supply to the muscular part of the heart obstructing blood flow. The patient was desperate to have the procedure performed; she hoped to experience a life outside of hospitals, to reconnect with her family, to start painting again. With my sense of righteous optimism intact from my medical school days, I convinced the other doctors that, in spite of the risks, we should try it.
The procedure was uneventful, but when I was updated on the patient’s condition the next morning, I was stunned. Overnight, she had gone into complete heart block: a failure of the electrical transmissions that cause the heart to beat, a rare but known complication of the procedure. She temporarily lost her pulse, underwent CPR and electrical defibrillation. A pacemaker had to be inserted. She was transferred to the intensive care unit.
Later in the day, the complications cascaded, and she found herself buried again under the flexed wrists of medical residents and nurses, pushing her sternum into a doughy pulp. After half an hour of frenzied CPR, infusions, electrical shocks and other assorted hail marys, resuscitation was called off. As the silhouettes in scrubs withdrew from her bed, she lay there limp, frothing from the mouth, dead.
This was not the way this story was supposed to end. Certainly not how I had imagined it would.
Since then, I have come to believe that I was a victim of irrational optimism, a condition running rampant in both doctors and patients, particularly in end-of-life care.
Physicians are thought to be the harbingers of bad tidings, the people who use cold words like “prognosis.” But studies show that they are just as capable of emotions as their patients are. According to a study published in 2000 in the British medical journal BMJ, about two-thirds of doctors overestimate the survival of terminally ill patients.
A study of cancer patients and their doctors in the Annals of Internal Medicine a year later found that many doctors didn’t quite tell patients the truth about their prognosis. Doctors were up front about their patients’ estimated survival 37 percent of the time; refused to give any estimate 23 percent of the time; and told patients something else 40 percent of the time. Around 70 percent of the discrepant estimates were overly optimistic.
This optimism is far from harmless. It drives doctors to endorse treatments that most likely won’t save patients’ lives, but may cause them unnecessary suffering and inch their families toward medical bankruptcy.
One source of this optimism is pop culture, which frequently depicts heroic recoveries from seemingly life-threatening situations. Another is the medical school experience. What motivates weary medical students is the hope that one day interventions they perform will save lives, heal families and enact cosmic good.
Later, our judgment becomes clouded as we build relationships with patients, share their fears and anxieties, cherish their small victories and celebrations and hope that there may still be a way, however unlikely, they can make it to their grandson’s bar mitzvah.
And yet studies have shown that patients almost universally prefer to be told the truth. If physicians cannot deliver the hard facts, not only do they deprive their patients of crucial information, but they also delay the conversation about introducing palliative care.
Modern palliative care originated in response to the proliferation of new treatments and resuscitation technologies. Keeping a patient “alive” became easier. And yet the definition of “alive” suffered — with quality of life frequently being usurped by length of life.
Palliative care was the first alternative approach that allopathic medicine offered patients and has now gained wide acceptance. One of the greatest milestones for palliative care was a study published in 2010 in The New England Journal of Medicine that showed that patients with lung cancer who early on had palliative care integrated with standard cancer care not only had a better quality of life, but lived a few months longer than those who received standard care alone. Yet we use this strategy far less than we should and insist on more invasive treatments, even when there is little chance that they will work.
It’s not just the doctors who are guilty of false hope — it’s the patients, too.
When I became a resident, one of my patients was an elderly woman with a tumor that continued growing despite the most powerful (read: toxic) chemotherapies. She had come down with an infection, but was almost completely depleted of white blood cells, the body’s sentient guardians against such invasions. And yet, she wanted more of the same, more chemotherapy, more radiation, more intubations and more resuscitations.
I wanted to do everything I could to save her, but I remembered the patient from my internship, the one with heart failure, and I didn’t want to make the same mistake. I knew there were only a few things we could do to provide real comfort. So I emptied out a waiting room to create a safe place for the patient’s daughter, her appointed health care proxy. This was not the first time she had found herself in a room of worried physicians, all of whom knew all too well the magnitude of her mother’s illness and the futility of carrying on.
AND yet she maintained that her mother would want everything, from intubation and mechanical breathing to cardiac resuscitation and CPR. I implored her that the chances of her mother’s being revived by those maneuvers and her having a life beyond the blunt end of a breathing machine were maybe just 1 percent. And yet the allure of that sliver of a chance kept her going.
The patient’s condition got worse. The tumor grew to the point that we had to put in a tube to deflate her intestines. She developed clots in her lungs, but we couldn’t treat them with blood thinners because she was already bleeding internally. She had to get all of her medications and nutrition through an I.V. It was clear to the team that the more humane thing to do would be to focus on her symptoms and keep her comfortable rather than trying to extend her life.
But there was nothing we could do to uproot the horror of irrational optimism that had spread through her body like a cancer uncontrollable.
Haider Javed Warraich is a resident in internal medicine at the Beth Israel Deaconess Medical Center and the author of the novel “Auras of the Jinn.”
NY Times, 3/5/2013
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