George L. had been on a breathing machine in the intensive care unit for 11 days. My resident ran through George’s complicated review of systems, then told me he would receive a tracheostomy, or “trach,” in the operating room on Day 14. “They had an opening in the schedule so we took it,” the resident reported, the pride of efficiency in his voice.
Temporary breathing tubes, which enter through the mouth, can cause damage to the delicate tissues of the throat. To mitigate this risk, a more permanent tube is surgically implanted through the neck at the Adam’s Apple, usually on or around the fourteenth day. I call this “the two-week trach point.” In addition to preventing damage, trachs are more stable, more comfortable, and easier to clean than temporary breathing tubes. Their secure placement makes it possible for patients to be moved to a less acute location, which is much more cost-effective. And so my resident’s forethought would likely save the health care system money.
For patients who have a good chance of recovery from their illness, the trach can be a lifesaver. Sometimes it takes longer than two weeks to regain strength and alertness enough to breathe on one’s own again. But for those patients who are dying or have almost no chance of returning to a quality of life they would find acceptable, it can be a trap.
Yet doctors tend to treat all patients — those destined for robust recovery and those approaching death — in the exact same way.
The information and consent process for the trach usually revolves around the risks of surgery — bleeding, infection, death — rather than the longer-term implications of the decision. For 66-year-old George, whose catastrophic CT scan foretold a future of severe neurologic compromise, his future with a trach would most likely include permanent attachment to a breathing machine, a feeding tube sewn into his stomach, and arm restraints to prevent dislodgment of these tubes.
George might remain alive in this condition for weeks, months, or even years. He would probably never eat again, nor interact with his family and friends. But his family had no idea. They thought that the trach would help cure George.
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How can there be such a discrepancy between what doctors know and loved ones hope? There are many reasons, but a few stand out. We doctors abhor uncertainty and often remain mum until we’re more sure. But perfect certainty is hard to come by in medicine. So doctors stand silent as they continue to prolong life on machines — and breed false hope.
Doctors also are efficient. Protocols help us remember the multitude of details that go into the care of extremely sick patients, and help to move them as safely as possible to the next, lower acuity, location. For patients with trachs, this is usually a ventilator facility, where patients with long-term ventilator dependence are managed by respiratory therapists quickly, efficiently, and at much lower cost than care in an ICU. And so in George’s case, my resident had performed his role perfectly, lining up George for a quick and efficient trip to the OR to receive his trach before discharge to a ventilatory facility.
The term Chronic Critical Illness was coined in 1985 for patients with serious illness, many of whom rely on machines to keep them alive until they die. The elderly are at much higher risk for this condition, and as the Baby Boom generation ages, its prevalence will skyrocket. A 2015 study found that of 3 million ICU admissions, 8%, or 250,000, met the criteria for Chronic Critical Illness. A study in 2010 reported that annual costs of treatment for this population exceeded $20 billion, and that figure has been rising, given the aging U.S. population.
The two-week trach point is a crucial crossroads. When decisions with such serious implications are made without full disclosure of all the facts, doctors take people into territory they may never have agreed to visit had they known. Moreover, this is not what people say that they want. 80% of people say they want to die at home, but only about 30% do. As if the levels of human suffering weren’t enough, the financial costs are huge. For prolonged mechanical ventilation, the predicted cost per year of life of a 65-year-old patient was $82,411, and $206,000 for an 85-year-old. Given the continued rise in the rate of elderly patients on prolonged mechanical ventilation, the projected costs are staggering.
And so I sat down with George’s family after rounds. I began by asking them what kind of person he was. What was important to him? What things did he like to do? They described a vibrant man, the center of his family, engaging and extroverted. He liked to read, walk his dog, cook dinner with his wife. Then it was time for me to give them my bad news: although there is always uncertainty in medicine, George’s CT scan told a very worrisome story.
We discussed the trach — not only the benefits they already knew, but the burdens of a life of Chronic Critical Illness. I told them that once the surgical connection has been made, it can be extremely hard on families to disconnect their loved one from the machine — harder, in my experience, than removing a temporary tube.
They were stunned. They sat in silence, faces downcast. We’ll need some time to talk and reconsider, they said. I scheduled a time to reconvene the next day, and in the meantime, I called the surgeons to put this case on hold.
The next day, the family told me they didn’t want to trach George. They knew he would never accept living like that. They didn’t think he would be willing to live with any significant cognitive compromise at all, which was inevitable by that point. The tube was removed and George died three days later, his family gathered at his bedside.
I have cared for patients like George more often than I can count. This default tendency to trach at two weeks, creating machine-dependent bodies with little discussion, has created a public health crisis — physical, fiscal, and emotional. The only solution, as I see it, is honest and real-time communication. People need and deserve a more robust understanding of the truth of their condition, and their options. Doctors must lift our heads out of protocols and checklists in order to have these discussions. The efficiency achieved by securing a spot on the operating room schedule on Day 14 might be robbing someone of the right to choose their own destiny, with dignity.
Jessica Nutik Zitter, M.D., M.P.H., is the author of Extreme Measures: Finding a Better Path to the End of Life (Penguin-Random House). An expert on the medical experience of death and dying, Dr. Zitter practices at the county hospital in Oakland, Calif. She is featured in the Academy Award nominated Netflix documentary Extremis.