John was a highly successful civil engineer and a loving husband. He was by nature a real go-getter. And so when his wife was told that she would need complicated heart surgery for a dysfunctional heart valve, he went into full throttle. They arranged to have her surgery at the best cardiac hospital in the country. They flew to the Midwest for what they thought would be a few weeks’ stay—a few days to settle in, a lengthy surgery, and then two weeks for recovery and rehab. The plan was for them to return home where Linda would undergo an intensive program for cardiac rehabilitation in order to get her right back to her active life. John did his homework, learning about the possible pitfalls of this surgery, and figuring out how they would overcome each one.
But things didn’t go as planned, and Linda’s post-operative course grew more dire by the day. At two weeks, she remained on the breathing machine, one complication after another plaguing her recovery. John was at the bedside day and night, pacing the halls, begging for more information, reading all that he could about the complications that were arising and possible treatment options. He asked to join the doctors’ rounds every day and stood with them as they pondered the various causes of her deterioration. As they scratched their heads, he scratched his. As they discussed medication side effects, he suggested new ones to try. John loved his wife and he would do anything to save her.
Yet Linda continued to steadily decline, and by the time a mutual friend pulled me in for advice, it was obvious to me that she was dying. But when I spoke with John, I realized that he had no idea. He had been so consumed by the drive to cure her, come what may, that even though he understood each problem as it arose, he couldn’t see forest for the trees. And the doctors, his only guides through this terrain, had not told him. Rather than honestly delivering difficult news, they had supported him in his grief-stricken efforts to keep up the fight. Even when they must have realized it was lost.
John had asked for everything that he thought could possibly help his wife, and he had gotten almost all of it.
Most doctors, particularly those in the ICU, are trained to “do everything,” medically speaking. That means that as bodies begin to fail, we automatically reach for the machines and catheters that sit idling in the wings, using them to prop up organs, resuscitate hearts, breathe for failing lungs. These tools are truly miracles of modern medicine—many thousands of lives are saved by them every year in ICUs around the world. Yet when used on bodies that are truly dying, there are serious drawbacks. The number of overly mechanized deaths is rising. The statistics are staggering– 30% of people in the US die either in or recently discharged from an ICU. Many of them are on machines until their last breath or heartbeat, encased by machinery, separated from their family, and far from home. And this is not the way that most of us, when asked on surveys, would want to pass from this world.
How can this be happening? Why aren’t we reserving these powerful machines and treatments for cases where they have a good chance of helping? Why are we routinely treating patients in ways that go against common sense and stated preferences?
The answer is more complicated than it might appear. The physician, who is the de facto guide for medical decision-making, was trained in a culture which highly values the tools of our trade. Doctors are imbued with a sense that caring is best demonstrated through concrete action. More important, this same training did not prepare us for the breaking of bad news or the ability to recommend switching goals of care to a focus on quality of life as opposed to life-prolongation. We are poorly equipped to handle emotions of sadness or anger from our patients or their families, and see those responses, and the prospect of death in itself, as a sign that we have failed. And so we are inclined to just keep treating, instead of processing and reflecting on next steps, even after the trajectory has become painfully clear. Many of our patients therefore end up riding on what I have come to call the “End of life conveyor belt,” where their dying bodies become progressively dependent on our technologies and treatments until they die, attached to machines in an ICU or ventilator facility.
Within this shaky environment, the attitude and behaviors of patients and their families can have a big impact, whether exacerbating or productive, on the problem. The truth is that the doctor will take a lot of her cues from your behavior. Maybe it shouldn’t be that way, but I believe it’s true. We all want to believe that there is one “right” treatment path, and that it will be followed and tweaked along the way by some scientific formula, but the reality is much more human than that.
In times of stress, many of us appreciate marching orders. And the doctor is no exception. A clear directive can be a comfort, even if it has become outdated. Parsing out a patient’s preferences, current and future within various “what if” scenarios, wrestling with medical uncertainties, or moving a hopeful family into a more realistic place can be difficult, and at times, overwhelming for a physician. Research shows that it takes time and continued effort to help patients and families absorb bad news. And there is much difficult emotion to be faced by the doctor along the way, including anger, disappointment, and blame, something we are not well-trained to manage. And with a competent and eager surrogate like John on the case, who was committed to “doing everything,” it is disturbing but not surprising that the course was set at full throttle without re-evaluation.
But the good news is that doctors are also responsive to a different kind of messaging from patients and their families. If given permission, they are much more likely to give their honest assessments. If you want realistic information from your doctor, go ahead and ask her. Some options might include: What would you do if this were your mother? Do you think she’ll ever be able to talk again? Eat again? Breathe on her own? Will she ever wake up? Be able to come home with us? If you don’t want to know the answers to these very important questions, you may get pulled further along a course of care that, given opportunity for further reflection, you wouldn’t actually want. So I’d advise you to take a deep breath and ask for the truth you might think you don’t want to know.
When it comes to this stage of life, every moment is precious, and the best way to get what you really want is to have a clear understanding of what is going on. Sometimes your doctor needs your permission to go there.
Jessica Nutik Zitter, MD, MPH practices critical and palliative care at Highland Hospital in Oakland, California. An expert on the medical experience of death and dying, she is the author of EXTREME MEASURES: Finding a Better Path to the End of Life (Avery Books, Feb. 21, 2017). A graduate of Stanford University and Case Western Reserve Medical School, Dr. Zitter completed her residency in internal medicine at the Brigham and Women’s Hospital in Boston. She was a fellow in pulmonary and critical care medicine at the University of California San Francisco, and earned a Master’s in Public Health degree from University of California, Berkeley.
Jessica is at: