Perspectives on the Acute Care Continuum

The Acute Care Continuum is the integration of urgent, emergent, inpatient and post-discharge care of patients with acute medical conditions.

#3 - Doctors Die Differently

12/15/2015 10:24:35 AM | 2 comments

Doctors facing life-limiting illness tend to choose less aggressive end-of-life care. So why do they so often hesitate to counsel patients toward these options? An emergency physician explores this conundrum in our third-most read post of 2015.

During my medical training, I participated in a paramedic ride-along. We encountered five patients in cardiac arrest that day, all of whom were elderly. Every patient arrived at the hospital with a pulse, so I considered the outing a success.
Sadly, I later learned that all five of our "saves" had died by the day's end. The news was a little tough, but I still took pride in doing my job, which was to save lives. Or so I believed at the time.

A Double Standard?

Over the years, I've often revisited that day when we cared for people in their final hours. I've wondered what I would want in their position, and truth be told, the answer wasn't broken ribs, intubation or a last gasp in the intensive care unit (ICU).
Like most physicians, I've seen far too many patients undergo painful, aggressive treatments that might (at most) extend their lives by a few days. It's certainly not the kind of care we'd choose for our loved ones or ourselves. And yet today in America, 29 percent of deaths still occur in acute care hospitals, and 29 percent of Medicare beneficiaries experience an ICU stay in the last month of life.
Which begs the question: if doctors reject heroic end-of-life measures for themselves, why do we so often take them with our patients?

Doctors: Going Down Easy

In my experience, physicians are unique not because of how much life-prolonging medical treatment they receive, but because of how little. Interestingly, for all the time and effort we spend to help our patients avoid death, physicians tend to face dying with acceptance and minimal advanced life support.
A few months ago, I ran across a fascinating study conducted by the Stanford University School of Medicine. The researchers were investigating whether doctors' personal resuscitation and organ donation preferences impacted their attitudes toward patients' advanced directives. (They did.) But what was even more striking was how universally the doctors in the study rejected aggressive life-saving measures for themselves. In fact, an overwhelming 88.3 percent of the participants said that when the chance of recovery is uncertain, they would choose "no code" or "do-not-resuscitate" orders.
While the Stanford team is perhaps the first to put numbers on the issue, many physicians have also remarked on this tendency. In his touching 2011 essay, "How Doctors Die," Ken Murray, MD, notes:

"I cannot count the number of times fellow physicians have told me, in words that vary only slightly, 'Promise me if you find me like this that you’ll kill me.' They mean it. Some medical personnel wear medallions stamped 'NO CODE' to tell physicians not to perform CPR on them. I have even seen it as a tattoo."


Patients: Fighting for Dignity

In a way, these findings shouldn't be surprising. Study after study shows that most people — doctors and non-doctors alike — want to die at home surrounded by their loved ones. Other attributes presented for the ideal death include having a sense of control over healthcare decisions, being without pain and trusting one's providers to make sound choices.
Contrast these desires with some current realities about death in America:
In other words, research suggests that most Americans do not die the way they want to.

Roots of the Problem

So why do doctors administer so much care that they would not want for themselves? One reason may be that we are trained to recognize our success through our actions. That's probably one reason my student self considered our EMT ride-along such a success. In my relative inexperience, I saw prolonging life, no matter how briefly, as the very essence of my job. It took many years of experience before I was able to balance my duty to preserve life with my equally important duties to prevent needless suffering and preserve human dignity.
Another reason physicians continue aggressive, life-prolonging treatment is to indulge the family’s needs — sometimes at the expense of the patient’s. “Please doctor, do everything!” They tell us. As physicians, we need to remember that many people are unrealistically optimistic about the efficacy of lifesaving measures. Their experience with resuscitation is likely limited to movies and TV, where CPR is usually successful and the patient recovers immediately and fully. (Remember the scene in Jurassic Park where it works so well that the child wakes up and finishes his last sentence?) However, doctors know that in reality, only 3 percent of cardiac arrest patients return to their normal lives.
Finally, allowing patients to die can also bring up our own feelings of inadequacy. For physicians, a death on one's watch can be a very personal kind of failure. Opting for less aggressive treatment often provokes feelings of guilt or makes us wonder if we are "abandoning" our patients. At least when we are aggressive, we know we've done everything we can.

Learning New Ways to Care

So how can physicians recognize when further high-intensity care is futile and even detrimental? According Vyjeyanthi S. Periyakoil, a palliative care expert and lead author of the Stanford study, the first step is to get honest with ourselves:

“Our current default is 'doing,' but in any serious illness there comes a tipping point where the high-intensity treatment becomes more of a burden than the disease itself.”

Easier said than done, right? Changing the goals of treatment, or even broaching the subject, feels momentous. But we can make it a little bit easier (and less personal) by reaching out:

"It’s tricky, but physicians don’t have to figure it out by themselves. They can talk to the patients and their families and to the other interdisciplinary team members, and it becomes much easier."

She goes on to note that doctors aren't trained to talk. But comfortable or not, end-of-life care is fundamentally about communication. Physicians must take the necessary time to inform patients and families about realistic outcomes and options. We must listen and be candid. And we must prepare for these conversations by familiarizing ourselves with palliative care resources in our hospitals and communities.
These conversations can be challenging, but can also be extremely rewarding and empowering for our patients. There's no doubt it's what I want for myself at my life’s end, and if it's good enough for me, who am I to deny it to others?
I hope in the near future, we can mitigate the disparity between what we want for ourselves and what we offer to our patients. Certainly, we are brave to fend off death, but sometimes we are even more courageous in allowing people to die with dignity.

[Image credit: "Grandma Langford reading to her grandchildren" by State Library Victoria Collections licensed under CC BY 2.0

Jeff Bass
Hi Barbara,

Thank you for the excellent article! All too often, we the medical team torture people and their families at the end of their lives by performing painful procedures and admit them to the ICU where they're essentially tied to the bed with tubes sticking through multiple newly created orifices. It's a picture more appropriate for a Frankenstein movie than an ideal way of leaving this earth. All of this occurs at a huge emotional cost to the family and and financial cost to our society. We frequently use these resources on people for whom this will not make a difference. The more compassionate thing to do is to educate the patient (if they are conscious) and their family as to realistic expectations of what will happen in the ICU and provide them with a clear picture of the expected outcome so that they can make informed decisions before going down that path. Having a strong Palliative Care team can greatly assist with this process and is a worthwhile endeavor. Allowing people to exit this world on their own terms with dignity can be a very fulfilling experience for all involved.
12/16/2015 11:10:29 AM

Rick Newell
Great article Barb. It is so true that we can be more courageous with our end of life conversations with our patients and families.
12/16/2015 8:23:57 AM