When people say they want “everything” done at the end of life, they are not told what “everything” entails, or the futility of that choice.
Growing up in Midland, Texas, some of my good friends had photographs of dead people hanging on their walls. Let me be clear: the subjects were photographed after they had died. They weren’t just any dead people; they were dear, departed relatives. And the relatives were lying in their caskets.
I had never seen a post-mortem photograph before (and rarely since), much less one prominently displayed amongst other family portraiture. These photographs were often taken at wakes in the deceased’s home, sometimes with family gathered around the casket. As it turns out, post-mortem photography was not uncommon until the 1960s, although its demise hastened with the sheer volume of death in World War I.
World wars aside, I don’t think it coincidental that post-mortem photography faded away as two other trends commenced in the middle of the last century: the rise of cardiac care and ICUs and the increasing movement away from dying at home. Death could now be delayed, if not outright defeated – at least that’s what we were led to believe. Staying alive at all costs became the goal, even the promise. Gone were the days where Grandma lived out her days in a multigenerational household and died surrounded by family (and then had her photograph taken). Grandma got put in the ICU instead.
Today, only a third or so of people in the U.S. die at home. Unfortunately, it is far too common for death to occur in a starkly bright room, the body attached to beeping machines with all sorts of fluids running in and out via assorted tubes, any family having been ushered out so that the code team has room to work. When our patients say they want “everything” done at the end of life, they are not told what “everything” entails, or the futility and isolation of that choice.
According to the American Heart Association, immediate CPR can double or triple chances of survival after cardiac arrest. This is why we encourage the public to know how to perform CPR and why automated external defibrillators (AEDs) are widely accessible in public spaces. Still, the survival rate of out-of-hospital cardiac arrest is only 7.6%. Television shows would lead our patients to believe otherwise. For “Code Blue” resuscitation attempts in the hospital in older patients with chronic illness, no more than 2% end up making it out of the hospital and surviving six months. And the few who do “survive” are often in a much worse state than before, both physically and mentally. It is our duty to educate our patients on the real statistics with resuscitation efforts, especially at the end of life.
Patients need to understand that being coded at the end of life entails a medical team pummeling on your chest, over and over, often breaking ribs, possibly causing bleeding in the lungs or liver, and potentially providing just enough oxygen to your brain for you to be aware of what is happening before you die. That’s not to mention the multiple electrical shocks, which are strong enough to raise your body off the table. Not a peaceful way to go. No wonder most of us physicians don’t want to be resuscitated when we die.
Yet we don’t have this much-needed discussion with our patients. We should stop framing the conversation as keeping someone alive with resuscitation efforts and admit what it most often is: a futile attempt to bring someone back to life that is already dead.
Most patients with advanced cancer would prefer to die at home. I suspect it is similar for patients with other end-stage illnesses. We all tend to say we just want to fall asleep and not wake up. With comprehensive end-of-life comfort care – the raison d'etre of the hospice movement – most people can die peacefully at home with good pain and symptom management.
We do seem to be turning a corner. The CDC reports that the percentage of deaths that occurred in a hospital decreased from 48.0% in 2000 to 35.1% in 2018, while the percentage of deaths at home increased from 22.7% to 31.4%. The growing acceptance of hospice care, especially among Medicare beneficiaries, certainly plays a role.
The choice isn’t really about dying at home, in a hospital, or some other facility. The real question is what type of care do our patients want at the end of life? Do they want to be allowed to die naturally when it is their time to go, or do they want their body assaulted in a futile attempt to bring them back to life? If we don’t have that conversation with our patients and document their wishes, hospitals and emergency personnel must call the code. Personally, I don’t want that on my conscience.
Death is the natural end to each of our stories. End of life choices about how we die leave indelible images in the minds — if not always on the walls — of those left behind. Will a family’s closing memory of their loved one be a portrait of peaceful repose or of a distressing, traumatic exit? It is our duty as physicians to help our patients get the final picture right. Start the conversation now.
Dr. Sid Roberts is a radiation oncologist and hospice physician in Lufkin, Texas.
Illustration by April Brust