“WE DON’T UNDERSTAND. He was fine just two days ago.”
This is the common rejoinder of many families faced with the imminent death of a loved one after losing a battle with critical illness. It is indeed very difficult to comprehend how someone can seemingly be fine one moment and then, after suffering multi-organ failure from septic shock, be dying in a matter of hours.
Many physicians and nurse colleagues have a hard time with this, and it is multiplied many times over for those without a background in medicine or science.
Yet sadly, this scenario repeatedly plays itself out in countless ICUs all across the country. The overwhelming emotion that many of these frightened and distraught family members feel is guilt, tremendous guilt.
This is because the health care team is now presenting them with a terrible choice: continue aggressive care, which will only delay the inevitable and prolong their loved one’s suffering, or change the goal of care to one of comfort, which will likely lead to the death of their loved one.
Guilt, like denial, is a very powerful emotion.
Thus the guilt. Many families know—in their heart of hearts—that focusing on comfort is the right decision when the chances of meaningful recovery are slim. Yet they still feel guilty because they sense that, by “letting them go,” they would be somehow “giving up” on their loved one or even “killing them” by turning off the pressors and mechanical ventilation. I can see it in their eyes and faces, even if they do not say a word. I can see it because I went through the exact same thing with my daughter.
We did everything we could
My daughter suffered from a crippling genetic disorder that led to cancer. After six rounds of grueling chemotherapy, she lost her battle with gram-negative septic shock and died. She was 12 years old. The pain and horror of her loss haunts me every day of my life, even though it happened more than eight years ago.
Yet I do not have guilt. I held her limp, febrile body in my arms as she breathed her last, but I do not have guilt. Even though her heart stopped on its own, sparing me the decision to withdraw care, I would not have hesitated to make such a decision. And I would not have had any guilt.
I tell this very story to the families of the patients in my ICU who will, most unfortunately, not leave alive. I tell them that they will have pain, lots of pain, for many days, months and even years to come. I tell them that the burden of grief may be significant, especially if they are parents losing their child.
But I counsel them against carrying a burden of guilt. Here’s what I tell them: “The burden of grief is enough. Don’t carry the burden of guilt. It is not fair to yourself, and it is not fair for anyone else to do that to you.”
With my daughter, we did everything we could, but she still passed away. It hurts, but I am not guilty. The same is true for our ICU patients: We did everything we could, but it didn’t work. Now, we need to make sure that the same patient, whose death is inevitable, dies with dignity, comfort and peace. And we need to help their families.
That’s also true for those patients from whom we withhold aggressive therapy from the very beginning, such as frail, elderly patients who already have so many medical problems that aggressive care will bring about only suffering.
If, after a discussion with the health care team, the decision is made to withhold aggressive care, we need to make sure we tell the family that there is nothing they should feel guilty about. They are not “killing” their loved one. Instead, they are making sure their loved one is comfortable and not being subjected to needless suffering.
Guilt, like denial, is a very powerful emotion. It is frequently the enemy of compassionate care when aggressive care causes only further pain. While it is sad to see patients die, it is nonetheless true that they will soon be at peace.
Their families, however, will be left to live on afterwards. As healers invested in the well-being of not only our patients but their family members, we need to make sure to tell them that their burden of grief is enough. They don’t need to take on or carry the burden of guilt as well.
Hesham Hassaballa, MD, is regional medical director, critical care, for Sound Physicians and practices at Rush Copley Medical Center in Aurora, Ill. This commentary originally appeared last year on the Sound Physicians blog.Published in the May 2018 issue of Today’s Hospitalist
Thanks for sharing. Li
As someone who has had both parents on hospice this article hits close to my heart. Thank you for sharing.
Well said, this advice needs to be heeded in all end-of-life discussions. Thank you. Mary Dellorso, ANP.