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The elephant in the room: end-of-life discussion with patients

Bernadette Hee, MD
Physician
September 26, 2022
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I have been at my current hospital for 12-plus years now. Like many of you, I have gotten to know some of my patients very well. I have known some of them since I first started out here. We talk about my dogs and cows, our newest grandkids, and politics if we feel adventurous. This is an extraordinary relationship built on the intangible magic generated over time, known as rapport and founded on trust.

As time and disease take their inevitable toll, our patients become frailer. Their thoughts and ours inevitably turn to the tough decision: what would they want to be done in the event of a cardiac or pulmonary arrest?

We all took an oath. Above all, do no harm. We have all learned that there are far worse things than death. There is a difference between life and quality of life. As we know, the contrast can sometimes be painfully glaring. Unfortunately, a discussion about end-of-life decisions is something that no one can elude forever. At some point, death comes for us all.

To the general public, the concept of DNR is surrounded by a veritable fog of misinformation. Their impression of the medical field is colored by the often unrealistic portrayals in Hollywood. Many times, patients hear the acronym DNR and incorrectly assume that they will receive NO care. Often, comfort measures are what patients envision when they think of DNR. This is a far more common misconception our patients hold about DNR status than we realize.

When patients are reassured that they will still receive the same level of care save that they will not undergo CPR, defibrillation, or intubation, there is often an outpouring of profound relief. Once the distinction is explained, patients then feel empowered. With encouragement, patients then feel free to ask questions and make their own informed decisions.

I have garnered somewhat of a reputation in my hospital. As a general rule, if they’re open to the discussion, I ask my patients with end-stage COPD, metastatic cancer, severe pulmonary fibrosis, severe pulmonary hypertension, terminal cardiomyopathy, or ALS if they want heroic measures or wish to pass peacefully.

I try to have these difficult discussions and decisions in the outpatient setting whenever possible. I think this should be addressed by a caregiver well-versed with the details of their condition and prognosis — they have established trust and rapport.

This is a complicated discussion for everyone involved, but I feel this is a sacred duty we owe to our patients. Our patients deserve to have a familiar, trusted face to discuss the long-term ramifications of their disease, explain what options are available, and help them decide on their end-of-life choices. Most importantly, we must ensure they are comfortable with whatever choice they make.

How often have you had to discuss end-of-life issues with someone in the hospital, and it is the first time you have met them? In these instances, we have not had the luxury of time to develop the rapport that we have developed with our longtime patients in the office. The unsurprising and unmistakable deer-in-the-headlights look on patients’ faces is our failing. It is a glaring omission we should do our level best to rectify. If we avoid addressing this important issue, we are negligent in addressing a critical component of our patient’s care. We are compounding the problem by just passing the responsibility onto someone else.

It goes without saying that the off-putting DNR discussion is inherently painful for everyone involved. That being said, it should be an integral part of treatment plans for severe diseases. By having these talks, we will know and be able to honor our patients’ wishes.

Medicine is not just a job; it is a calling.

To be worthy of the trust our patients’ place in us, we cannot shirk this duty. It may very well be the last and best service we can provide for our patients and one we owe them.

Bernadette Hee is a pulmonary-critical care physician and is the author of Kairn (Mates of the Alliance Book 1). She can be reached on Twitter @MatesofAlliance and Instagram @matesofthealliance.

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