It is another night on call in the intensive care unit. The night shift starts with what we call a sign-out where the physicians who have been taking care of these critically ill patients during the day tell me a bit about each of them as well as any issues that would be useful to know of overnight.
“Mr. Brown* is an 85-year-old man who was admitted with a stroke,” my colleague starts in the typical format of a medical presentation. She tells me he was initially DNR/DNI. This acronym (Do Not Rescusitate/Do Not Intubate) is shorthand for letting people die, if their heart should stop, without pounding on their chest, doing CPR (cardiopulmonary resuscitation) or giving electrical shocks (DNR), and without putting in breathing tubes and putting them on a respirator (DNI).
“Last night he had an acute episode of shortness of breath, and the family made him full code,” she tells me. Full code is the opposite of DNR/DNI. It means if the heart stops, if the patient stops breathing, if the patient dies, someone will call “Code Blue” and many of us will run into the room trying to reverse the process, if possible. The shortness of breath went away, she tells me, he didn’t have to come to the intensive care unit or get a breathing tube or a new procedure.
This man was dying, and he wasn’t quite sure what he wanted. It’s hard to talk about death. We all say that the best place for these conversations is between the patient and their family and the primary care doctor, but the reality of primary care practice is that it doesn’t allow the time to discuss these things. And the reality is that these conversations are difficult for all of us. They’re difficult and traumatic in any situation. In our family, I conceded to my four year old that we will all live forever because he welled up at the thought of someone dying even if it’s “to make room for babies.”
Talking about death with a doctor is very specific. Difficult questions have to be asked. How would you want to die? Would you ever want to be intubated? Would you want to be intubated for some period of time to see if the process was reversible to some degree? Would you want to stay on a ventilator (breathing machine) if it meant that you would never get off, that you wouldn’t ever come home? If your heart should stop, would you want your family to let nature take its course or would you want them to call 911? To attempt CPR? Shocks? Your frail bones would probably not fare well with CPR and it would be unlikely to be successful. But should they try?
You don’t have to tell me, I always say. These are not questions you need to answer me right now, or even ever. And while it’s nice to write down your wishes for reference, far, far more important is to talk to your family about them, I tell my patients. These are difficult questions for you now, but imagine how much more difficult they would be for your family to try to answer for you. How much guilt and blame and suffering might result if people who love you interpret what you would have wanted differently. Help them know what to do if something like this happens.
And Mr. Brown is exactly the reason why. It is hard to imagine what something would be like before it actually happens. To see a loved one struggling to breathe, panicking, it’s hard to resist the impulse to do something. And something must be done either way. Put in a breathing tube and proceed aggressively or administer medications to relieve the anxiety and sensation of shortness of breath without necessarily addressing the primary cause of low oxygen. And sometimes we change our minds. What we thought we wanted or didn’t want changes when faced with the actual situation – for patients as much as for their families. A peaceful death at home sounds idyllic except, sometimes, when it seems so imminent. Some day, we all think, we’d like to “go gentle into the good night,” as the poet Dylan Thomas puts it. But not today. Today, we want to “rage, rage against the dying of the light.”
We never know exactly how we are going to feel until it comes. It is about 3 o’clock in the morning and a “code blue” is called. A “code blue” is called when someone in the hospital is dying and acutely sick. It signals many physicians, respiratory therapists, and nurses to rush to the bedside and evaluate the patient, start cardiopulmonary resuscitation, if appropriate, and try to save someone from death. A “code blue” is no small matter. Electric shocks are administered, chest compressions performed, breathing tube placed, medications administered, fluids given, tests sent. Chest compressions require significant force to push on the heart through the chest wall and push the blood around. It is not unusual for ribs to crack during this process, if it is done correctly.
The patient is quickly brought down to the intensive care unit. After the initial flurry – breathing tube is in, catheter is placed, medications administered, shocks given, there is a slower pace. We do chest compressions, check for a pulse, compressions, give another dose of the medications, and keep checking – did the heart start beating again, did the lab tests come back, what is the diagnosis? During this, second phase of CPR there is time to gather the family. Some have not left the hospital and are quickly there, already in the waiting room, some are being called from home. I can’t leave the patient bedside. Our nurse comes to talk to the family, and we bring them in during the code. We are not bringing him back we tell them. We can keep trying if that is what you think he would have wanted, but we may not manage to get him through anyway.
The outcome of cardiopulmonary arrest – when someone is so ill as to require CPR – is not binary. You don’t just have two options: live or die. In the grand sense you do, but not in the sense that most of us think about it. Most of us think that you get through it and go back to your normal life, or something close to it, or you die. So why not give it a shot. But when someone is down for a long time, the brain may not be getting enough oxygen, other organs may not be getting enough oxygen and not all of these injuries are reversible.
“Please stop,” the family tells us. And we do. We pronounce him dead. We clean him up, take out the tubes and leave the family with their dad, husband, brother, uncle. More and more family members arrive – there is hardly room around the bed for all of them. Twenty or more people are gathered around him, some crying, some hugging, some holding his hand. “What a lucky man,” I think.
It occurs to me that this scene – someone dying surrounded by a large family is more unusual in hospitals than one would imagine. When surveyed, most people say they want to die at home surrounded by family and friends. People are afraid of dying in pain and dying alone. But the way I see people die in the hospital is too often in these traumatic situations surrounded by doctors and nurses doing things that in the end don’t help. To die with family and friends, to have lived such a life that family and friends gather at your deathbed mourning your loss, that is something to aspire to indeed.
* Please note identifying patient details, such as name, have been altered or omitted to protect patient privacy.