We all have exactly one thing in common: We’re going to die — as will everyone we know.
Perhaps that’s shocking, or at least unsettling, to read. We tend to find consideration of our ends disturbing, but if we want it to go well, we need to be, in some measure, prepared. Though many of us don’t exactly enjoy thinking about the end of life, it turns out that most of us, when the time comes, do have preferences for how and when we go.
Most want to be at home, with family. And in 2017, for the first time in 100 years, more people died at home than in hospitals, according to a study in the New England Journal of Medicine. That’s a response to the medicalization of death that occurred with the advent of resuscitative and life-saving medical technologies over the 20th century.
Still, most of us will find ourselves or our loved ones, at one time or another, moderately to gravely ill in the hospital. When we do, that hospital stay and its aftereffects are bound to be much more tolerable if we have some semblance of a plan in place.
What’s your “code status”?
What kind of a plan? At the most basic level, we should all determine what doctors refer to as our “code status,” which is another way of asking: If we go into cardiac arrest, do we want providers to perform CPR (cardiopulmonary resuscitation), which entails chest compressions and rescue breaths?
Of course, you might think. Why wouldn’t I want the doctors to try to restart my heart and save my life? The problem is that only a small minority of patients — about 10 to 20% — who receive CPR survive long enough to be discharged from the hospital. And CPR is traumatic, for both the patient and their loved ones, not to mention providers. It’s violent and invasive, especially on the frail and elderly; properly performed, it breaks ribs. Sometimes letting go peacefully makes for a better end.
Doctors who work in high-acuity settings like intensive care units and hospice facilities witness and participate in the drama of CPR on a regular basis. Most would not elect it for their loved ones. According to A Beginner’s Guide to the End: Practical Advice for Facing Death and Living Life, a practical, how-to guide for approaching end-of-life matters by Dr. BJ Miller and Shoshana Berger, “88.3% of doctors report that they would choose a Do Not Resuscitate order for themselves.”
“CPR is just doing what’s needed to make sure the brain gets enough oxygen,” says Dr. Juliet Fernandez, a critical care anesthesiologist in Worcester, Massachusetts. “It’s brutal. I bluntly tell patients and families when I don’t think someone should have CPR. A more peaceful hospital death is possible.”
Miller and Berger agree that CPR carries a lot of risk and only little potential benefit at the end of life. Rather than asking whether patients want all measures performed to keep them alive, they say, doctors should ask, “When you are actively dying and there’s little to no chance of bringing you back, do you want us to help you die comfortably and peacefully?”
But end-of-life planning is more complicated than just to CPR or not to CPR. Once you are sick, the nearly infinite array of medical options can threaten to overwhelm. Do you want to be on a ventilator, a machine that breathes for you? Do you want your mother to have dialysis, or external filtration of waste products from the blood, if her kidneys stop functioning as they should?
Recognizing the complexity of end-of-life care and planning, doctors often do not expect you to make decisions at this granular level. Rather than focusing on what procedures and equipment patients and their families would or would not like used, palliative care physicians prefer to discuss the patient’s values: what their daily life looks like, which activities they enjoy, what relationships are most important to them. This way, they can design a care plan that honors the patient’s priorities.
What is palliative care?
Medicare defines palliative care as an approach that optimizes quality of life throughout the continuum of illness, not just at its end, addressing physical, intellectual, emotional, social, and spiritual needs while respecting patient autonomy and choice. Consulting a palliative care team does not mean stopping treatment or “letting the patient die.”
Rather, a consultation is directed toward determining goals that align with the patient’s values and desires. This multidisciplinary field is revolutionizing the way health-care providers and institutions regard health and disease, shifting the focus from all-treatment-at-all-costs to a more thoughtful, patient-centered methodology.
“Conversations should be based on underlying values and what makes life meaningful for someone,” says Dr. Haider Warraich, a cardiologist at Duke University. “I recently took care of a patient who, when we had a discussion about code status, they indicated they wanted everything done to save their life. But when I got to know the patient, it became clear they did not want to be in the hospital, they wanted to be at home. If I could redo that discussion, I would first ask about who the patient was underneath the illness, and what was important to them in a broad sense.”
That’s why, Warraich explains, it’s important to designate a proxy who knows you well and won’t flinch from making health-care decisions if you are not able — for instance, if you are sedated or unconscious.
“Picking a health-care proxy is even more important than declaring whether you want resuscitation because a proxy, a person, is dynamic,” Warraich says. “They can respond to a changing situation; anything on paper is inherently static.”
When to ignore a DNR
Dr. Jeremy Topin, a critical care physician practicing in Chicago, recalls a time when his wife’s grandfather contracted a severe case of food poisoning that led to pneumonia and dangerously low blood pressure.
The grandfather had previously declared himself DNR/Do Not Intubate, but doctors needed to intubate (put a tube down his trachea to help him breathe) to keep him alive. He wasn’t suffering from a long-term, terminal illness; his chances of a full, speedy recovery were excellent. The family and doctors made a collective decision to ignore the directive and intubate. Sure enough, the patient was discharged from the intensive care unit five days later, and back home living independently shortly after.
A success story, on its surface. But patients should know that the doctor isn’t always right, or her priorities may be misaligned with the patient’s. Topin spoke with his grandfather-in-law later, after the food poisoning incident, to confirm that he and the health-care team had made the right choice in overturning the DNR. But the grandfather demurred. The ordeal had been stressful and traumatic; he wished his directive had been respected.
“Doctors are trained to do more,” says Fernandez, the anesthesiologist in Massachusetts. “It’s difficult to hold back. We continue to offer treatments even when it’s not appropriate, especially in our litigious society, for fear of retribution. Few are comfortable setting boundaries.”
Topin has another elderly family member, an aunt, who was resuscitated from the brink of death after a failed heart surgery. Topin felt the doctors should not perform CPR; the data did not support the aunt’s chances for survival. But, to his surprise, after dozens of electrical shocks with a defibrillator, she did ultimately make a full recovery, walking out of a long-term acute care facility a few months later with no regrets.
“It was a very humbling experience,” Topin says. “I was wrong. Physicians need to respect that we aren’t perfect, we don’t know it all. We have a lot of statistics, but numbers aren’t everything. Doctors often feel families are being unreasonable or don’t understand the odds of what their loved one is facing. But everyone deserves to advocate for themselves and their dear ones, to find their own way in these difficult situations.”
It’s crucial for doctors and families alike to respect the wishes of the sick and dying, as articulated by their proxies, regardless of their own preferences. Sarah Cross, a social worker and palliative care researcher at Duke University, tells the story of a man who was receiving hospice care at home when he began to deteriorate rapidly. Hospice means supportive care for patients who are likely to die in the next six months, with a focus on comfort and quality of life, and it is often administered at home.
“The patient had previously signed a DNR and his wife understood and agreed with his wishes,” Cross says. “The patient’s brother was visiting from out of state and really pressured the wife into rescinding the DNR. As a result, this man who was actively dying was subjected to invasive procedures that would not cure his underlying terminal illness and quite likely caused suffering. What struck with me most was how torn the patient’s wife was. She was grieving her dying husband, but also trying to keep the family peace.”
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The critical first step
All of the providers I spoke to for this story agreed that the critical step anyone and everyone should take as soon as possible is to open up dialogue with their family and loved ones — and primary care physician (PCP), if they have one — about what gives their life meaning, and how they envision their ideal end-of-life care unfolding. It’s never too soon. These subjects can be frightening to discuss, but the earlier we talk about them, the better the outcome when we finally do arrive at a critical health situation.
“By normalizing conversation about death, we defang it,” says Warraich, the Duke cardiologist. “It’s striking how so many of us go through our entire lives without confronting the fact of our own mortality. We always feel like it’s too early — until it isn’t. If a doctor raises the issue of end-of-life planning with you, it isn’t because you’re actively dying. It’s because they’re practicing good medicine, trying to get at the heart of who you are and what matters to you. And you should always feel free to bring it up with your PCP.”
Fernandez agrees, and adds that we should think of death as a natural part of life, not a failure to stay alive.
“When people are sick, we invoke the language of fighting a battle, which is dangerous,” she says. “The implication is that, if you die, you’ve ‘lost’ the battle. Instead, we should spend time near the end of life celebrating the person, their history and achievements and relationships.”
She recalls a patient in her 90s with irreversible organ failure whom she placed on comfort care measures with the consent of the whole family, which means the care team only gave treatment to ease suffering and improve quality of life, not to treat underlying illness. This, Fernandez says, was a good hospital death.
“The patient passed serenely,” she says. “Everyone had a chance to say goodbye, including a priest. Family brought in pictures and mementos to decorate the room. They were able to mourn together, and reminisce about good moments with her, fond memories from throughout her long life. That time and the peace it afforded were a gift to the patient and her family.”
Jennifer R. Bernstein, the co-founder and former editor of the New Inquiry, is a writer and journalist based in Nashville, Tennessee, whose work has also appeared in the New Republic, the Nation, Hazlitt, and elsewhere.