Recently I met the husband of a patient with a diagnosis of advanced lung cancer. Even though she was young and had been healthy, the disease spread to her bones. I outlined treatment for this incurable illness; choices, goals and side effects. This was a very tough meeting, because by the end we had to discuss time as measured by dollars.
The particular challenge was that this family had health insurance with a large co-pay. This meant that they would pay 25% of any medical bill. In addition, his wife had been the major breadwinner, their children were still in school, and the couple had limited financial resources. Any therapy, which his wife received, would likely have a direct effect on the lives of the family, perhaps for years to come.
No matter what we did, she would die. Treatment would be palliative, designed to improve quality of life and perhaps extend her survival for weeks or a couple months. The best therapeutic alternatives included “active” medications, which would easily cost tens of thousands of dollars, even for a single added month of life.
This loving husband, to both his wife and children, tried to calculate how much money to spend on the possibility that his wife might live, with cancer, for a short time longer. What would be the quality of that life? How would spending all their savings, going deeply into debt to buy a few weeks, affect the lives of the children. Was it worth the cost?
He did not know what his wife desired. He had not spoken with her about this terrible dilemma. He found it incredibly hard to put her in the position of deciding whether to stop or limit therapy, and thus give her children a better life after she was gone, or to fight the disease, and try to give her children more time with her now. Add to this the dilemma that she might also be determining how long she would live, and he found himself unable to add that much pain to her heart. How many of us could hurt someone we love with such a burden?
After a long discussion, I convinced him that as much as he loved her and wanted to protect her, that it had to be his wife’s decision. I reassured him that when the three of us met, I would be gentle and patient, and would not corner her into a place of desperation. We would move step by step, maybe even treatment by treatment, to protect her, him, the children and, incredibly, their bank account.
In the kind of event, which happen so often in oncology as to make one wonder about a divine hand, we never had that meeting. Before we could act the cancer spread to the base of her brain and she was admitted seizing and septic. As per her prior wishes, she was not placed on a machine and died within days.
We live in a cruel time when the price, human and financial, colludes to crush patients. Though more than a third of families will spend their last dime on medical care, we continue to develop and support therapies that often have marginal benefit, at massive cost. In a Kafkaesque twist, it is not clear that spending great amounts improves life’s length or quality. Money driven care punishes the rich, while the pain of illness and the guilt of too little punish the poor. The disease from which we suffer is not just of the body, but of the medical system itself.