Running away from cancer … literally

My first experience with denial in cancer care came with the very first patient I met as a medical student. It was the end of the second year of medical school and we were given our white coats and taken into the hospital to meet patients. I was assigned to an elderly woman with advanced lung cancer.

I had pored over the woman’s chart, so I was prepared for her poor condition. She sat upright in bed, struggling to breathe. Even though she was getting supplemental oxygen, her lips and fingernail beds were tinged blue. I cautiously made my way into the room and introduced myself.

“How are you feeling today?” I asked.

The woman brightened. “Oh, my arthritis isn’t so bad today. Thanks for asking.”

I spent almost an hour with this woman, discussing her hospitalization and medical history. Not once did she mention lung cancer. She acted as if she didn’t have lung cancer at all, and I was afraid to confront her directly. She was in denial.

In her case, denial was a useful coping strategy. She was not so mired in denial that she refused care for her cancer. Indeed, she had accepted state of the art cancer care complete with surgery immediately after the originally diagnosis, and chemotherapy along the way. But denial allowed her to put the frightening reality of end stage cancer out of her mind, and live the rest of her life in psychological comfort.

Sometimes, though, denial becomes a life threatening problem. It’s not hard to imagine why. Cancer patients face the paradigmatic case of being stuck between a rock and a hard place. They are told they have a disease that might kill them if they do nothing, and they must undergo brutal treatment in an effort to save their lives. The temptation always exists to pretend that they don’t have cancer, or that they don’t need arduous treatment to recover. Sometimes, the psychological pressure is so great that patients are tempted to run away from their cancer … literally.

That is what has happened in the tragic case of Daniel Hauser, a 13 year old boy with a highly curable cancer, whose mother has run off with him in an attempt to avoid the awful treatment. Obviously, they are running from the physical threat that the state of Minnesota will force Daniel to undergo the unpleasant treatment. Equally if not more importantly they are running away from the psychological threat that acknowledging the existence of the cancer and its life threatening nature poses.

As a mother myself, I cannot imagine anything worse that hearing that your child has a life threatening illness, and needs brutal treatment with no guarantee of survival. The mere thought of explaining that to a child, forcing a child to endure chemotherapy and witnessing his or her suffering makes me sick to my stomach. I don’t doubt that the reality is far worse than my worst imaginings. The only other choice is to pretend that the whole thing is not happening; it is just some perverse mistake; that the cancer will go away by itself or with gentle, “natural” treatments.

Daniel’s mother clings desperately to that belief. For her, it is an absolutely essential psychological coping mechanism. Unfortunately, it will almost assuredly result in Daniel’s death. This case is being reported in the media as a battle over who has the right to decide treatment for a child, the parents or the State, and legally, of course, that is exactly what it is. But psychologically, it is something else entirely, and it is important that everyone analyzing this case take note. In reality, it is about the mother’s need to protect herself psychologically from devastating news vs. her son’s right to receive life saving treatment.

That’s why the State is right to vigorously pursue the Hausers and force Daniel to have the brutal, but life saving treatment. Mrs. Hauser does not want to hurt her son; she loves him desperately and her willingness to single handedly defy the State of Minnesota proves it. Yet ultimately, the decision to run away is about her and her needs, not about Daniel and what is good for him. She needs to believe that he doesn’t have cancer, or that his cancer is not serious, or that she can treat him “naturally.” She may need to believe that, but it does not give her the moral right to forfeit his life to make herself feel better temporarily.

That’s what’s really at stake here: a mother’s need to protect herself by pretending that her child is not deathly ill vs. a child’s right to life saving treatment. In the best of all possible worlds, someone would be able to break the thick shell of her denial and get her to acknowledge reality. Her child is dying, no amount of pretending will prevent his death, and medical treatment represents the only chance to avert the disaster that she cannot bring herself to contemplate.

Daniel’s mother doesn’t realize it, but she and the State are in total agreement. More than anything else, she wants Daniel to live. More than anything else, the State of Minnesota wants Daniel to live. Her denial of reality is completely understandable, but that’s what it is: denial. And no child should have to die because his mother cannot face reality.