I knew it was bad when she couldn’t tell me her name. I watched her face fill with frustration as a word she had uttered countless times over eight decades somehow got lost between her brain and her lips.
It was 2 a.m. and I was on call as the surgical resident. I had been told that a patient with bladder cancer was being transferred from another hospital, and, as these things tend to happen, she finally arrived in the middle of the night.
I peeked at her and saw she was doing OK, so I let the nurses get her settled in as I looked over her medical chart.
The thick pile had pages of lab values, notes, and a CD. I watched as the images loaded on the computer and saw that a CT scan of her head had just been done before she was transferred. Even as a second-year resident, I could see the cancer scattered throughout her brain.
Unfortunately, this meant her bladder cancer had spread.
When I walked into the room, I introduced myself. She was sleepy but made good eye contact and smiled. That’s when I asked for her name. When she couldn’t answer, my heart sank. She had no living family left and no documentation of how she wanted to be taken care of in her final days. And now it was too late to ask.
We in the health care field are not good at navigating death and this deficit has not gone unnoticed. Dr. Atul Gawande and many health care workers as well as medical institutions have openly reflected on the ways we fail our patients when it comes to talking about dying and guiding their decisions. This not only results in millions of health care dollars spent without any survival benefit, but it also leads to patients dying uncomfortably in hospitals instead of peacefully at home.
This push to do everything at the end of life is understandable but not necessarily good.
Doctors go along with it because we spend so many years learning how to do everything: We learn how to clinically evaluate a patient, how disease and the body works, and all the medications and procedures we can use to treat patients. We are trained to fight illness with death as our implied enemy.
Thus, a good death is an oxymoronic, alien and uncomfortable concept. Yet, as health care providers, our oath is not to keep someone’s heart beating, lungs breathing and body warm for as long as possible — no; our oath is to relieve suffering.
Separating suffering from death is hard to do but critical. Everyone will die, but that does not mean that all must suffer.
When I think of patients dying in the hospital, I think of breathing tubes, loud beeping machines, uncomfortable beds and a round robin of strangers checking in on you throughout the day. That is not how I want to die, nor how I want any of my loved ones to die. “Doing everything” sounds irreproachable, but it is not harmless or painless; and it is often not worth it.
When we delay discussions of end of life goals, we rob patients of the chance to diminish their suffering during their last days. We take away their voice and their control, and simultaneously unload the stress and burden of making these crucial decisions on their loved ones.
Why do we delay asking patients how they want to die? Because it is an innately uncomfortable topic, but more importantly, it is because we are not prepared.
Many doctors are not familiar with all the services and treatments that are available for end of life care. There’s palliative care, there’s hospice care and other variations including comfort care. To be clear, many of these are also used to help patients with serious illnesses who can recover and are not just for end-of-life issues. All of this can add to the confusion.
So I think: “This is not my job.” “There must be someone else more qualified to have this discussion.” And this is true to some extent. There are doctors who specialize in palliative and end of life care, but they have to be consulted by the primary team and sometimes they aren’t included until very late in the process. Additionally, a recent study done by the Center to Advance Palliative Care showed that over a quarter of large hospitals in the U.S. did not have a palliative care program available as of 2013.
One way to fight these obstacles is to prepare all doctors to start the conversation. Just as we are taught to listen to breath sounds and heartbeats, to ask about medications and allergies, we should all be taught in medical school to ask patients how they want to die and be able to talk about how we can diminish suffering along the way.
This does not mean we need to ask every teenager with a sports injury or 42-year-old with gall bladder disease how they want to spend their last days; but hopefully, when a very sick patient comes to the hospital in the middle of the night, there’s a better chance that her wishes have been heard along the way and her last days will be more peaceful for it.
Nancy Wang is a surgery resident.
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