What a Living Will Can—and Can’t—Do for You

My friend Anne taught me some important things about dying.

Anne had congestive heart failure. In January 2012 her cardiologist told her regretfully that she probably wouldn’t live past the end of the month, so she went home to set her affairs in order and to say her goodbyes. She made up her mind to refuse any medical procedures aimed at keeping her alive; she’d let nature take its course.

The end of January passed. Anne was still alive, but she was weak, easily exhausted and tethered to a machine called an oxygen concentrator that helped her breathe.

In April, a nosebleed that just wouldn’t stop landed Anne in the emergency room. After getting the bleed under control, a doctor did a blood test. The result: she was so anemic that if she didn’t have a transfusion, her internal organs would begin to shut down. The transfusion would be a life-saving procedure, something she’d sworn she would avoid. She started to refuse it—until she saw her husband’s face. She agreed to be transfused.

A few days later, she was amazed to find that she could breathe comfortably without the oxygen machine. Gradually, she regained some of her strength. In late April, she wrote to friends about how much she was enjoying “this sweet little coda to a life that almost ended this past January.” She was still dying of heart failure but apparently not anytime soon. In fact, she lived for another 15 months, cramming her life with all the things she cared about most.

I remember thinking that, if Anne had had a living will like mine and had arrived at the ER unconscious and extremely anemic, she wouldn’t have been given a transfusion. My living will—a fairly standard document that spells out what medical treatments I want (or don’t want) if I’m unable to speak for myself—lists transfusions among the things I don’t want done to me if I’m terminally ill. She would have missed that sweet coda to her life. I almost tore up my document. 

But then I read an opinion piece at Next Avenue, in which Kathryn B. Kirkland, MD, a professor at Dartmouth’s Geisel School of Medicine, argued that, in some circumstances, doctors can and should reject the instructions in a patient’s advance directive. (A living will is an advance directive.) Living wills work best, she wrote, when it’s clear that a patient is dying. But often that’s not clear. The person might have some good months or even years ahead—as Anne did when she had the transfusion. And legally, doctors can refuse to comply with your directive if they consider its instructions wrong in your situation.

Kirkland described an 88-year-old woman who arrived in the ER struggling to breathe because her heart was failing. Her living will rejected all forms of life support when her time came, including intubation with a ventilator. But was she actually dying?

The doctor in charge consulted the patient’s daughter, who was also her health care representative, legally entitled to speak for her if she couldn’t speak for herself. The doctor and the daughter agreed that the woman should be intubated—despite her living will—because there was a reasonable chance she’d recover if she was put on the ventilator temporarily and given heart medications. And she did recover.

I’m sure some people were appalled when they read Kirkland’s piece. Most of us who sign a living will assume medical professionals have to do what it says—after all, it’s a legal document. That’s always been my assumption, and I’ve sat at the bedsides of relatives whose doctors did honor their wills, no questions asked.

But according to the American Bar Association, it’s not true that living wills are legally binding and that doctors have to follow them. Mainly, these documents protect physicians and others when they withhold treatments as you’ve instructed in your advance directive.

Physicians can’t simply disregard a directive on a whim. But if they believe a living will’s stipulations don’t fit a patient’s medical situation, they don’t have to follow them. They can also decline if a will’s instructions go against their conscience—they can’t be forced to pull the plug on life-sustaining equipment, for example—but in that case, they should turn your care over to someone who is willing to follow your instructions. The consequences if medical professionals fail to obey a living will are apparently minimal, though some hospitals and doctors have been sued for not following a directive and keeping a patient alive.

I have to say that I was relieved—not appalled—when I learned that doctors don’t necessarily have to go along with my living will. I’d hate to think that something I signed years ago could rigidly determine whether I live or die.

It seems to me that dying is even more unpredictable than living. Which means there’s something we should all have that can be more important than a living will. It’s a durable medical power of attorney, also known as a health care proxy. You use it to give someone you trust the power to make medical decisions for you if you’re unable to make them for yourself. That person becomes your health care representative.

My daughter is my representative. Though I don’t trust the terms of my living will to dictate exactly what’s best for me in a specific moment of crisis, I do trust her.

A POLST is something else worth having. POLST is an acronym for Physician Orders for Life-Sustaining Treatment. It’s a medical order, not a legal document. Your doctor writes out the order in consultation with you (or your health care representative), usually after you’ve become terminally ill. The doctor explains what your options are likely to be in the future, given your specific medical condition, and records what you want done. You can say, for example, whether you want to be given antibiotics if you develop an infection that might end your life.

Your POLST goes along with you if you’re taken to the hospital or to a skilled nursing facility after discharge from a hospital. It’s more specific in its instructions than living wills usually are, and doctors are likely to honor it. It can be revised at any time if your condition changes.

Is a living will necessary if proxies and POLSTs often work better? I haven’t torn mine up. It gets across the fact that I don’t want extreme measures that can only prolong the process of dying. And I believe it will protect my family. I’ve known people who had to make life-and-death decisions for someone they loved when they had no idea what that person would have wanted. It’s a terrible position to be in, and I don’t want that for my family. I realize I also need to have conversations with them and with my doctors about my wishes. I plan to say that my condition at the time should dictate what’s done to me and to tell them to interpret the will flexibly.

Less than a third of adult Americans have an advance directive. Perhaps some people have avoided signing one because it seems too final—and requires deciding now about what’s to be done in a scary, unforeseeable future. They may feel better, as I do, knowing that their doctors and their medical representative won’t necessarily be bound by the document if it doesn’t make sense at the time.

I’m 82, and it’s a comfort to know I’ve done what I can to ease my own death: I have a living will, a health care representative I completely trust and, once I’m close to the end, I’ll want a POLST.

Meanwhile, I need to buckle down and have those conversations about this complicated, crucial topic with my family and my doctor.