Actions surrounding the moment of death are highly symbolic

In a recent article in The New England Journal of Medicine entitled “Is It Always Wrong to Perform Futile CPR?”, a doctor describes the case of a baby boy who had been born with a large encephalocele on his forehead – a neural tube defect that allows the brain and its surrounding membrane to protrude outside the skull. The child survived surgery to remove the growth, but was left effectively brain dead (“neurologically devastated”).

The doctor, Robert Truog, a professor of medical ethics, anesthesia and pediatrics at Harvard Medical School, had cared for the boy when he was repeatedly admitted to the intensive care unit. The parents had been advised to limit the boy’s care to the relief of pain, but they insisted that doctors treat the child aggressively and do everything they could to keep him alive. The boy had survived the first two years of his life.

“You didn’t just give up and let him die”

One night the child was rushed to the hospital. Dr. Truog noted: “He appeared chalky and lifeless; I remember thinking that he might already be dead.” The parents had been adamant in their refusal to sign a DNR order (Do Not Resuscitate). Dr. Truog told the medical staff to start CPR.

CPR can be very hard on the recipient. It involves chest compressions forceful enough to break ribs. Large bore needles are inserted into the chest to deliver drugs and fluids. The heart receives strong electrical shocks. It’s violent, invasive, disturbing, and can be difficult to witness. The staff spent 15 minutes trying to revive the boy. One nurse told Dr. Truog that she found the procedure so upsetting she had to fight the urge to vomit.

The attempt was unsuccessful. The boy’s small body, bruised and covered with wounds, was returned to the parents. Dr. Truog describes their response:

I went to talk to the parents. They had arrived at the hospital a short time after the code blue was called and were holding their little boy. I fully expected to be on the receiving end of an angry tirade full of accusations about our failure to keep their son alive. Instead, the mood was remarkably quiet and somber, as they began the universal grieving of parents for a lost child. But what surprised me the most was when the father gently opened his son’s shirt, revealing all the puncture wounds and bruises from our failed attempts to place a subclavian catheter. He looked up at me and said, “I want to thank you. I can see from this that you really tried; you didn’t just give up and let him die.”

For the sake of the family we should do this brutal thing?

Medically and ethically doctors are supposed to focus exclusively on the welfare of the patient. Dr. Truog asked himself: Is it ever justified to perform futile CPR when it will be of no benefit to the patient? When it’s done simply for the sake of the family?

He identifies the arguments against futile CPR: It might harm the patient; it compromises medical standards; it might compromise the care of other patients by diverting resources; it contributes to the burnout of the already stressed staff in the intensive care unit.

Other doctors, commenting on Dr. Truog’s decision to proceed with CPR, consider it a bad call. Dr. Paul R. Helft, an oncologist and director of an Indiana ethics center:

In a sense what it does is, it says that we are … using this procedure on the boy to benefit the family. … We are using this boy as a means to an end, an end unrelated to his own well-being. You will hear clinicians say this all the time: ‘Even though the patient is already gone, we are treating the family now.’ There are lots of other ways the family can be treated.

Dr. Norman Fost, a pediatrician and ethicist at the University of Wisconsin:

If you can’t say no to things that won’t work, God knows what the limit is. … The notion that doctors owe it to families to try resuscitation is a perversion of what medicine is for. It is an extraordinarily expensive form of psychotherapy. … Because families would have had bad feelings we should do this brutal thing?

Families: Regrets and aftereffects of end-of-life decisions

But for Dr. Truog, this incident provided a different perspective:

Most families want their loved ones to be peaceful and comfortable when death is near. Some patients and families, however, do not share this vision of a “good death.” For some, it is very important to believe that they fought until the very end. …
Although the interests of the patient are always primary, at the end of life there are times when the interests of the patient begin to wane, while those of the family intensify. Family members may live for years with the psychological aftereffects and regrets of end-of-life decisions. In these situations, the interests of the surviving family members may take priority.

[A]ctions surrounding the moment of death are highly symbolic and often of great significance to the surviving family. By sometimes agreeing to provide futile CPR, we send a message to our communities not that clinicians can be bullied into performing procedures that good medical judgment would oppose, but that our hospitals are invested in treating patients and families with response and concern for their individual needs. The message to our medical and nursing colleagues is not that they can be forced to perform brutal and unnecessary procedures on their patients, but rather that – in a small number of cases – providing nonbeneficial CPR can be an act of sincere caring and compassion.

Medical decisions at the end of life remain a matter of considerable controversy. The story Dr. Truog shares is a contribution to an important and ongoing conversation.

Sources:

Robert D. Truog, M.D., Is It Always Wrong to Perform Futile CPR?, The New England Journal of Medicine, February 11, 2010, Vol 362 No 6 p 477-479

Gina Kolata, Murky Path in Deciding on Care at the End, The New York Times, February 22, 2010