Trauma or Comfort at End of Life

Posted Jul 08, 2023 by Sidney C. Roberts, MD, FACR

Growing up in Midland, Texas, some of my good friends were a brother and sister in a very musical family. One daughter played clarinet in band with me and her younger brother played French horn. The parents sang and played instruments. The family even constituted their own recorder ensemble. As quaint as that may sound, they were truly very talented. Being the only musical member of my family, I thought having a musical family was so cool.

Another peculiar thing I remember about them: They had photographs on the wall of deceased relatives in their caskets. I had never seen a post-mortem photograph before, much less one prominently displayed amongst other family portraiture. As it turns out, post-mortem photography was not uncommon until the 1960s,[1] although its demise hastened with the sheer volume of death in World War I.[2]

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 intensive care units 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 United States die at home.[3] 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 a “code team” – the group of doctors, nurses, respiratory therapists, and others tasked with trying to bring the dead back to life – has room to work. 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.

At its most basic, cardiopulmonary resuscitation (CPR) is an emergency lifesaving procedure performed when the heart stops beating. According to the American Heart Association, immediate CPR can double or triple chances of survival after cardiac arrest.[4] 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%.[5] Television shows would lead you to believe otherwise.

Knowing CPR might save a life when a seemingly healthy person suffers a heart attack on the street makes one assume resuscitation is equally effective when a sick patient is dying at the end of life. It is not. 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 6 months.[6] And the few who do “survive” are often in a much worse state than before, both physically and mentally. We should stop framing the discussion 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.

Trigger warning: If you don’t want to know what happens to your body during a typical code, stop reading. Having a code run on you at the end of life requires a medical team to pummel on your chest, over and over, often breaking ribs, causing bleeding in the lungs or liver, and possibly providing just enough oxygen to your brain for you to be aware of what is happening before you die.[7] 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.

Most patients with advanced cancer would prefer to die at home.[8] 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%.[9] The growing acceptance of hospice care, especially among Medicare beneficiaries, certainly plays a role.[10]

The choice isn’t really about dying at home, in a hospital, or some other facility.[11] The real question is, what type of care do you want at the end of life? Do you want to be allowed to die naturally when it is your time to go, or do you want your body assaulted in a futile attempt to bring you back to life? If you don’t make your wishes known to the contrary, hospitals and emergency personnel must try to bring you back to life.

How do you make these wishes known? You can start by forwarding this column to your family and telling them that if you are at the end of life, you want to be allowed to die naturally, if that is your wish. And if you are hospitalized at the end of life, every hospital will ask what your end of life preferences are, and you must tell them if you do not want to be resuscitated. Make sure there is a DNR (do not resuscitate) order on your chart. If you have a Living Will[12] or other pertinent legal document, provide it.

Death is the natural end of our life story. How we write that final chapter – with comfort or with trauma – is up to us. Start the conversation now.

[1] https://en.wikipedia.org/wiki/Post-mortem_photography

[2] https://www.nytimes.com/2020/02/18/style/iphone-death-portraits.html

[3] https://gh.bmj.com/content/6/9/e006766

[4] https://cpr.heart.org/en/resources/what-is-cpr

[5] https://www.ahajournals.org/doi/10.1161/CIRCOUTCOMES.109.889576

[6] https://journal.chestnet.org/article/S0012-3692(15)52389-1/fulltext

[7] https://www.npr.org/sections/health-shots/2023/05/29/1177914622/a-natural-death-may-be-preferable-for-many-than-enduring-cpr

[8] https://www.liebertpub.com/doi/10.1089/jpm.2000.3.287

[9] https://www.cdc.gov/mmwr/volumes/69/wr/mm6919a4.htm

[10] https://wpln.org/wp-content/uploads/sites/7/2021/12/NHPCO-Facts-Figures-2021-edition-1.pdf

[11] https://www.medpagetoday.com/geriatrics/generalgeriatrics/54014