When I was a general surgery intern, I was doing my very early morning pre-rounds on a frail female patient in her late 70s with significant cardio- and peripheral vascular disease. She’d been in the hospital for weeks and wasted away to no more than 85-90 pounds. She was not able to get out of bed unassisted. I don’t even remember why she was in the hospital, but what I remember vividly is walking in that morning to find her dead. Wait—was she? She was not breathing, and she didn’t have a pulse. What do I do?? I ran to her chart (they were still paper and at the nursing station in those days). Did she have a DNR order? No. She did not. I’m now obligated to call a code.
For the next confusing and frustrating 10-15 minutes, I watched as a whole team of professionally trained health care workers rolled her body over and shoved a stiff board underneath; watched as we pushed so hard on her chest that you could hear her brittle bones crack; watched as her body was jostled about, then paused to check for electrical activity of her heart. We worked in vain to bring back to life a patient who was clearly dead. This was not congruous with my Hippocratic oath: first do no harm.
I knew at the time how disturbing this was to me—I even wrote about it back then—more than 20 years ago. But I don’t think I realized how that was the start of my growing need to educate both my patients, the general population, and even doctors about end-of-life care. We have options; we can choose to die with dignity. We need to clarify the actual wishes of patients and their relatives in the hospital. And doctors have to lead this conversation. “The wish to talk about the EOL in an acute hospital setting is an individual matter and great diversity exists.” But everyone needs and deserves to have this conversation; it’s up to doctors to initiate it.
Through the years, I’ve started to take care of more and more patients in the hospital setting as a specialty consultant, and I continue to be dumbfounded by those patients who are listed as a “Full Code.” That may sound harsh, but these are patients in their 80s and 90s with significant health complications to include years of dialysis or even metastatic and terminal cancer. So I’m even more disappointed when I see physicians either gloss over their code status or completely ignore it altogether despite my bringing it up with the attending physician. All of this may sound morbid, but nothing is more morbid for a physician and patient than providing what amounts to futile and even barbaric care.
Why can’t we talk about death? We have to talk about death. I thought the United States was unique in its inability to adequately discuss or even think about death and dying. In health care, it’s inevitable. Correction; for everyone, it’s inevitable. But we are not special in our trepidation of this topic. A quick Google search of “difficulty talking about death” reveals that this is a prevalent issue in most, if not all, cultures. Also, when I started thinking about this topic, I assumed that the United States spends way more health care dollars on the last years of life in comparison to other countries—because this is what I see day to day as a physician treating patients in a hospital setting. But my assumptions were only partly correct. We spend a lot of money at the end of life—but so do other countries. Let’s talk about how expensive death is.
In America, health care expenditures typically total $80,000 in the last 12 months of life and $155,000 in the last 3 years. For patients over 65 who died with cancer, intensive care unit admissions were more than twice as common in the United States compared to all other countries. These are the patients I’m witnessing. This is expensive and futile care I see. Fortunately, in the U.S., dying in an acute care hospital has declined considerably. In 2010, U.S. deaths in a hospital were half that of the other countries studied. Dying in the hospital is often viewed negatively. I have personally witnessed families and even entire communities blame the hospital for the death of their loved one—typically complaining of a lack of proper care without any evidence to support such a conclusion. Surveys consistently suggest that people would like to be at home among family and loved ones when they die. Palliative and hospice care have helped to keep patients from dying in the acute hospital setting. When comparing years 2004 and 2009, the increase in use of hospice care in the U.S. was associated with significant decreases in the rates of hospital transfers (2.4 percent reduction), feeding-tube use (1.2 percent reduction), and ICU use (7.1 percent reduction). Doctors must not hesitate to make these referrals and set up appropriate end-of-life care.
Along with first do no harm, my other physician mantra is: just because I can, doesn’t mean I should. I am constantly asking myself, would I want this care for myself or my loved ones? I used to think all doctors practiced this way, but the sheer number of times patients have asked, “What would you do if this was your family member?” has taught me many physicians are practicing according to: “I can, so I should.” And I don’t think it’s an egotistical thing; I think we are natural helpers and doers and want to give the patient and/or family hope. But in so doing, we ignore the big picture: death is looming—and that’s OK. I think it’s important as a health care provider to practice medicine as if you’re doing it for your loved ones—at all times.
Society and sadly even physician reluctance to even acknowledge death—much less speak about it—makes it challenging to discuss end-of-life care. End-of-life discussions are especially important for patients living with life-threatening diseases and for their relatives. Elsewhere, it has been shown that talking about the end of life is associated with reduced costs and better quality of care in the final weeks of life. In my experience, it’s the rare patient that actually wants to talk about the end of life. This is why it’s paramount for physicians to initiate this conversation in a delicate, realistic, and frank fashion. As providers, we know what to anticipate and what’s likely to come. Patients rarely have that luxury. It’s our responsibility to educate them, guide them, and help them understand so they can truly express what it is they do and don’t want with respect to end-of-life care.
People tend to hold off on discussions about end-of-life care until they are seriously ill. Unfortunately, sometimes that’s too late for the patient to be able to communicate such wishes. That’s why it’s imperative to have these discussions with patients and their family members now—not tomorrow—not when already faced with serious illness. Talk now– when of sound mind and body—today.
Back to CPR—should we be doing this in such a knee-jerk fashion? Jason Tanguay, an emergency physician, said that CPR is meant to “bridge the person to an intervention. If they can’t get it, or there isn’t one, then what is it accomplishing?” This is an excellent way to think about it—and not new. In 1959, researchers at Johns Hopkins were the first to apply CPR to humans. In 1961, researchers said, “The act of resuscitation itself cannot be expected to cure the inciting disease.” Where did we lose our way with acknowledging what CPR is meant to truly accomplish? Part of that goes back to our inability to talk about death and dying.
How you say it matters as much as what you say. Do Not Resuscitate is the most common phrase. It’s prominently listed as “DNR” if they do not elect to be a “Full Code.” When talking to patients and family, it seems more important to emphasize allowing natural death and avoiding inappropriate morbidity which only prolongs the inevitable. If you ask a patient, “Do you want everything done,” without any explanation or knowledge of what that “everything” is, they’re likely going to say, “Of course!” And when you ask the loved one speaking on behalf of a dying family member—the relative who just wants their loved one around longer because they are not ready to let them go– the answer is always, “Do everything!”
But here are some things everyone ought to know—especially physicians. A review of 79 studies involving almost 150,000 patients, found the overall survival rate from cardiac arrest for in-patient/hospital CPR, survival rate is only 17 percent. Those survival numbers only worsen with age and chronic illness. A study looking at patients ≥ 67 years who had one or more of six chronic diseases (COPD, CHF, CKD, malignancy, diabetes, and cirrhosis) found that less than 2 percent of patients were resuscitated with CPR and survived for six months. About 30 percent of survivors of in-hospital cardiac arrest will have significant neurologic disability. And only 2 percent of those over 85 who suffer cardiac arrest survive without significant brain damage. Finally, for 2,575 out-of-hospital nursing home residents resuscitated after cardiac arrest, 2.2 percent survived their hospital stay and were discharged, while none of them reported a good 12-month functional recovery. This is the information we should be sharing with patients.
As physicians, we already know that CPR can result in broken ribs and sternum, liver lacerations, and pulmonary hemorrhage. Did we stop to think how CPR-induced consciousness provides enough blood to the brain so that the patient may awaken during resuscitation to experience it all? This likely contributes to why as many as half of those who survived CPR wish they had not received it.
First do no harm. Multiple studies reveal providers themselves experienced moral distress from futile resuscitations as well as intrusive memories and emotional exhaustion secondary to difficult resuscitations. I certainly have—refer to the first paragraph of this essay. So I go back to my mantra: just because I can, doesn’t mean I should. The question to pose to patients is not, “Do you want everything done?” The question is, “If your heart naturally stops—and you are dead—do you want us to do chest compressions and attempt reverse electrocution to bring you back to life?” Yeah, it’s longer. It’s more complicated. It takes more time. But isn’t that usually the norm when it comes to doing the right thing?
Alisa Berger is a urologist.
