“Oh God!” she groaned, looking upward with tears flooding her cheeks, which were stretched into the shape of agony. Her chest heaved uncontrollably with grief.
“I am so very sorry,” I whispered again while leaning in and stroking her hand.
This is what death notification often looks like and feels like. We doctors should be masters of delivering some of the worst news that could ever be uttered, the worst news that could ever be heard.
Suddenly, she sat bolt upright! Clearing her throat, and staring me squarely and directly in the eyes, she asked me the most common and most important question that could ever be answered during death notification: “Doctor, did he suffer?”
I heard the question echo in the air: “Doctor, did he suffer?” “Doctor, did he suffer?” “Doctor, did he suffer?”
The air was thick, silent, and still as I deliberated the answer. I never removed my eyes from hers, because I knew that no matter what, I needed to deliver the answer with complete honesty and integrity.
Very slowly, I answered: “No, I do not believe he suffered.”
Thankfully, it was the honest truth.
Some of the greatest human fears surrounding dying are not death itself. Instead, one of the most prominent concerns is whether suffering will or will not occur, whether someone did or did not suffer. In fact, themes of the presence or absence of suffering should be a human fear that we in healthcare seek to actively manage and address. We cannot divorce emotions from medical events and medical decision making, so it becomes our role to manage them instead.
Specifically, we must learn to manage fears of suffering in two distinct end of life scenarios:
1- As the end of life approaches.
2- During death notification.
Let’s discuss each briefly:
1- As the end of life approaches, we must be able to describe whether a choice may increase or produce unnecessary suffering. This sounds awfully heavy doesn’t it? Because, in healthcare we like to talk about beneficial outcomes of medical choices (even when giving our spiel about Risks, Benefits and Alternatives to treatment options). But, for the patient and the family, the potential for suffering may be at least as important, if not more important than the benefit potential.
In fact, on more than one occasion, the minute that I explained to a patient or surrogate that the broken ribs often produced by effective CPR could cause the 90 year old grandmother to suffer should she be resuscitated… the minute I used the word “suffering”… the whole plan changed.
At other times, I spend a great deal of time using words that explain how a plan of care will reduce or mitigate suffering: “We will not allow her to suffer. I will do my best to keep her comfortable.”
2- During death notification, some of the most important words which could ever be spoken are; “He did not suffer” or “I do not believe he suffered.” The catcher here is that these words must ONLY be spoken when they are the honest truth. These words are very powerful purveyors of peace for surviving loved ones and will become part of the oral history of the deceased. These honest words are a priceless gift.
So, if you are a healthcare provider, please start actively addressing “suffering” in your care of the dying or the dead.
If you are a patient or family member, ask your healthcare provider about how a medical intervention could increase or reduce “suffering.”
We will ALL benefit from more open conversations about the topic.