Excerpts from the book “Extreme Measures: Finding a Better Path to the End of Life”–Part 1

Goals of Hair 

My friend’s mother was coming to the end of her grueling fight with breast cancer. I had helped arrange home hospice services for her in her final days. By then she had become so sick from the relentless chemotherapy that she was spending most of her time either vomiting or sleeping. But finally in hospice she was able to rest. The bed was pulled into the center of the living room and she held court with her family. 

My friend pulled me aside a few days before her mother died. “My mother made me promise to make sure she never had any hairs growing on her chin. But now I’m seeing one growing. What should I do?” 

When she had still been healthy, before the cancer, before all of this, the older woman had made her daughter promise to immediately pluck any hairs on her chin when she was on her deathbed. Even if she was in a coma. They laughed about it at various times over the years, the good, and then the bad, but she had meant it. 

We ushered everyone from the room and shut the door. My friend shone a flashlight on her mother’s chin to illuminate the culprit hair, then plucked it. Then she brushed her mother’s hair and fastened it in a clip. She murmured into her mother’s ear that she was on the job. The woman died a few days later, impeccably groomed, as she had wanted.

This request, made in an intimate exchange between mother and daughter, is an example of what my team and I refer to as “goals of hair.” 

One might think that in these final days, a dying person wouldn’t notice or even care about how she looked. That by the time she has become so weak she can no longer brush her hair, or comb down an unruly cowlick, it won’t matter to her. But these little details, which may feel vain, or trivial, or a distraction from the real work of fighting disease, are a part of who we are. Losing the ability or strength to groom oneself can add a film of self-consciousness, sadness, or even despair to the suffering already present. And so I believe it is important to discuss with our loved ones these intimate, maybe embarrassing personal preferences. This conversation may someday enable someone to receive the gift of a bit of autonomy at a time when everything else may feel out of control. 

Are You on or off the Boat?

A few years ago, at a family get-together, I sat across from Terry, a retired hospice social worker. We compared notes on our varied experiences with end-of-life care in this country. And then she told me a chilling story. 

A year earlier, Terry had been thinking a lot about death. Although still spry, she had no close family living nearby and worried that if she were no longer able to speak for herself, she might be “hijacked,” as she put it, into a bad death. She was no stranger to the overuse of technology in dying patients. There was no doubt in her mind that she would never want to be kept alive on machines if she didn’t have a chance of returning to her life as a fully functioning individual. She had documented her preference on an Advance Directive, checking the box that stated: 

I do not want my life to be prolonged if (1) I have an incurable and irreversible condition that will result in my death within a relatively short time, (2) I become unconscious and, to a reasonable degree of medical certainty, I will not regain consciousness, or (3) the likely risks and burdens of treatment would outweigh the expected benefits. 

Then she had informed all of her close friends of this decision. But the best-laid schemes of mice and men go often askew. It wasn’t long after she filled out her form that she was taken to the hospital with crushing chest pain. Given how much this mattered to her, she had mentally rehearsed this moment and maintained the presence of mind to bring her Advance Directive to the hospital. But when she handed it to the cardiologist in the ER and said clearly, “I want to be DNR,” he looked at her as if she was crazy. 

“You can’t be DNR if you want us to fix the problem,” he told her. She was having a heart attack, he said, and the only chance of curing it would be with a catheterization procedure, during which he would dilate any blockage he found in her coronary arteries. But they had to hurry, he admonished, because they were approaching the ninety-minute window for this procedure. Time is muscle, and every minute of delay could cost her. 

Things might go wrong during the surgery, he explained, and if she was DNR he couldn’t try to fix them. A puncture of the catheter through the arterial wall, a dangerous arrhythmia that could stop her heart from pumping blood effectively, a stroke, a heart attack. He might even decide during the procedure that the blockages were too dangerous to dilate with a balloon and that she should go for open-heart surgery. He needed the flexibility to treat each of those conditions fully, and her DNR would be an impediment. 

Time is ticking, he said. Did she want to receive this potentially life-saving procedure? The risks were very small. 

She didn’t want to be on a breathing machine, she insisted. No matter what. She had seen it so many times and it had never turned out well, in her opinion. “Can’t you do the procedure, but let me die if things go badly?” 

The answer was a simple no. “I can’t let you die on the table,” he said. 

The doctor told her that if she wasn’t interested in the procedure, he would call the emergency room doctors in to provide medicines to treat her heart attack. But it would not fix the problem like he could. Then he made as if to leave. 

She stopped him. “Just do it,” she said. And with that, she was whisked away to the cath lab, her “door to balloon time” under the requisite ninety minutes. The procedure went well, she didn’t require a breathing machine, and she left the hospital after the weekend. But she couldn’t shake the terror of having had no voice, no choice. She felt abandoned by the system she had come to for help. 

This binary approach to care is often practiced by subspecialists such as cardiologists and surgeons. “If you don’t want to go with me all the way, you can’t go with me at all,” is the sentiment. It’s an on–off switch. If surgery is agreed to, a DNR order or a palliative care consultation is almost always off-limits. On the other hand, if a person elects or is assigned DNR status, as with Mrs. Z, more aggressive diagnostic or therapeutic approaches are usually taken off the table, even if they might mitigate the patient’s symptoms or allow her to live longer. 

So what would have happened if things had not gone as well as they did? What if, despite the doctor’s attempts to reverse a bad outcome, she landed in the ICU on the machines that she desperately sought to avoid? When would her Advance Directive be reactivated and the machines removed? Would that ever have happened? 

You may be wondering why Terry’s cardiologist was so unwilling to honor her stated and notarized wishes. I don’t know his motives but speculate that they might involve what is commonly known as the “thirty-day mortality statistic.” This system ranks doctors by the percentage of their patients who die by day thirty following a surgical procedure. The statistic is widely used by payers such as Medicare and state health agencies, with the aim of providing transparency to patients about the performance of hospitals and physicians against the state or national average. 

In theory, health care consumers will choose physicians or hospitals with the lowest mortality rates for the procedure they are considering. 

But the problem is that this statistic, with its impact on the reputations and careers of individual physicians and their departments, may be a disincentive for doctors to provide patient-centered care. There have been worrying reports of surgical patients dying slowly for weeks after their surgeries, for whom a palliative care consultation was delayed until day thirty-one post-op. How often are physicians making treatment decisions that put their own reputations above their patients’ needs? 

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Dr. Jessica Nutik Zitter, MD, MPH, is a national advocate for transforming the way people die in America, and is the author of the newly released “Extreme Measures: Finding a Better Path to the End of Life.”

She is a regular contributor to The New York Times and her writing has appeared in The Atlantic, Time Magazine, Journal of the American Medical Association, The Washington Post and many other publications. 

Dr. Zitter’s work is featured in the Academy and Emmy-nominated short documentary “Extremis,” available on Netflix. Her media appearances include CBS Sunday Morning, NPR’s Fresh Air with Terry Gross, The Doctors, The Leonard Lopate Show, and a Dr. Oz special, “The Death Show.”

Committed to mainstreaming conversations about death and dying, Dr. Zitter co-created a high school curriculum on Death Education that won top honors in the OpenIDEO End-of-Life Challenge. The idea was piloted at two Bay Area high schools in 2017 and is featured in a forthcoming documentary.  In addition, Dr. Zitter co-founded and served as the first medical director of Vital Decisions, a telephone counseling service for patients with life-limiting illness.

Learn more about her work on her website or sign up for her newsletter.