A broken system needs healing

My recent encounters with medical care in the United States have not been entirely reassuring. My sister was diagnosed with a brain tumor and cancer in her spinal fluid June 9. She had surgery for the brain tumor June 10. Exactly three weeks later she was moved to Calvary Hospital in the Bronx, the only hospital in the United States devoted exclusively to end-of-life care. Treatment was abandoned.

After surgery she was told that her cancer was “highly treatable.” The plan outlined 15 radiation treatments to her brain followed by chemotherapy to her brain followed by full-body chemo. Five days after surgery, a “reservoir” was put into her brain to allow for chemotherapy.  She was told this would be simple and take about 15 minutes. The surgeon’s bill alone was almost $20,000. This reservoir was never used.

After only two radiation treatments, she began to have seizures. She was no longer legally competent, so the doctors had to deal with me, her designated proxy. I was told that they could not continue radiation, but “recommended” starting chemo to the brain. They said there was a “reasonable chance” that they could get the cancer under control. 

Just one day after that conversation, her doctors failed to show up for the meeting of the “team” to determine what to do, probably because she had had another seizure and they knew they had lost her.  Had I agreed to their treatment plan the day before, the meeting would never have taken place. I don’t know how long they would have continued to treat her. She knew who she was, could still talk, but could not make decisions or understand what we were saying a lot of the time. 

The bills for the first three weeks of her care came to more than $200,000. More than $90,000 was not covered by her two insurance policies. What would have happened had she actually had all that treatment? How much would it have cost? And, truthfully, it could not have added one quality day to her life.

My experience has raised two issues for me. The first is that having insurance is no guarantee that an illness will not leave you broke. I am astonished at how much was spent in three weeks for my sister’s care. (The bills for the last five weeks are not all in yet.) I believe that had she lived six months, which patients with this disease frequently do, she would have used up everything. I cannot fathom why Americans tolerate this situation.

The second issue has to do with deciding on treatment. People worry about being denied treatment by the government, but people are denied treatment all the time because their insurance company refuses to pay or because they simply cannot come up with the money. Why is this better?

People should worry just as much about being given treatment that does not improve the quality or perhaps even length of their lives. My sister didn’t really want to know how dire her situation was. She once said, “My doctor’s job is to bring me good news.” As a result she received a lot of treatment that did nothing to improve her situation. Three knowledgeable medical professionals told me the treatment for her cancer is “not very effective,” but her doctors never admitted that. 

I approached one professional at the hospital and said, “The doctors keep talking about all this treatment, but the woman I see is dying. What do you think?” She sighed and said, “Your sister is a very sick woman. I had a friend who died of this, and her husband just took her home. The doctors will treat and treat and treat. You have to be the one to stop it. You have to be the one to say no.”

The certainty of our own death should be the great leveler, the thing we all have in common regardless of race, religion, or political persuasion, and we have allowed people to use it to divide us. We need to face our mortality, our fears, and the extraordinary emotional and financial difficulties we may encounter. At best, illness and death are gut-wrenching.  Can we figure out how to get through it without exploitation? Does even this have to be a political blood sport?

Patricia Hunt, of Staunton, is a Mary Baldwin College chaplain.