It was the best of care; it was the worst of care

My sister-in-law Sarah* passed away in February of last year after a brutal 6 year battle with ovarian cancer. She was only 49 years old and left a 9 year old daughter and husband. Her sojourn through the healthcare system illuminated both the incredible triumphs and the glaring defects in American medicine.

Ovarian cancer is a very bad disease. Because the ovaries are located deep within the body, ovarian cancer usually produces no symptoms until it has advanced to stage III of four possible stages. At that point, the 5 year survival rate has dropped dramatically, from 85-90% at stage I to 40% or less. Survival depends on aggressive treatment with surgery and chemotherapy.

The fact that Sarah survived for 6 years is a testament to the determination and ingenuity of her oncologist. Every time Sarah failed a regimen, and she failed many, the oncologist had a new regimen in reserve.

That treatment is physically grueling, but the encounters with the healthcare system that are necessary to access the treatment represent additional hurdles. Anyone who has read my previous posts knows that I am very cynical about the system, but I even I was repeatedly startled by the callousness and insensitivity of some of the incidents. I would not believe some of them had I not actually been there to witness them. One of those incidents was the meeting in which the doctor revealed to my sister-in-law that her disease had returned, was incurable and was facing certain death.

All along I was very involved in her care. I had arranged her original surgery and carefully followed her initial treatment with powerful chemotherapy. As a general matter, though, I did not accompany her to doctor’s appointments, preferring to clarify the few instances of concern by phone conversations. Approximately a year after the diagnosis, Sarah and her husband were scheduled to meet with her oncologist to discuss test results from new biopsies; she was afraid of bad news. I expected that she was going to get bad news because her new symptoms and her recent PET scan results were very ominous. I didn’t want to be there, and tried to beg off.

Sarah begged me to come. “I need you there because I don’’t understand the doctor.”

Sarah’s first language was not English, but her English was excellent and I was surprised that she thought she would have difficulty understanding.

She saw my confusion. “No, it’s not the language,” she said. “The doctor speaks too fast.”

I didn’t really understand the problem, but Sarah was so distraught, that I agreed to be there. I knew she was going to get bad news, so she deserved to have help handling it, if that is what she wanted.

Sarah was getting her care at one of the world’s greatest cancer centers. We met at the doctor’s office and waited more than an hour and a half before she appeared. The oncologist swept into the room, and with very little preamble began delivering the bad news at a rapid fire pace. I could see Sarah was confused.

“Wait a minute, wait a minute,” I said to the doctor. “I know what you are going to say, and I can’t understand you. Please slow down so Sarah can follow along.”

The doctor shot me a look of annoyance, but complied. She proceeded to tersely but slowly deliver the bad news. The biopsies showed that the ovarian cancer had returned less than 6 months after Sarah had finished rigorous chemotherapy. This was the worst possible sign. The fact that the cancer had returned so soon meant that she had failed the most aggressive chemotherapy in the arsenal. There was now no real chance to cure the disease; only a variety of treatments that might hold the cancer at bay for a few months or a few years.

The extent of the cancer’s return had not yet been established and that would help determine the amount of time she had left. An additional test was needed, and until those results were in, the doctor could not be more specific.

Sarah, already distraught, reported that she had been trying to get the doctor’s secretary to book to the test for weeks, and the secretary had not complied. Sarah did not know what to do next.

The doctor replied. “You’ve got to understand that we are very busy here. You’ll just have to wait until she gets around to it.”

“But I have cancer,” Sarah implored.

I would not have believed what happened next if I had not been there myself to witness it.

“Well, Sarah, everybody here has cancer, so you’ll just have to wait.”

Sarah burst into tears. The appointment was clearly over and the doctor moved to leave the room.

“I need to speak to you privately,” I called, as I got up to follow her out. I looked at Sarah. “With your permission, of course.” She nodded.

The doctor and I went out into the hall.

“Look,” I said, “I’m not going to ask you to cure Sarah. I know that’s impossible now.” I continued, “I don’t know how much time she has left, but for the remainder of that time could you please treat her with decency? She’s 44 years old, she has a 4 year old child, and she’s dying. Could you at least be nice?”

The doctor looked abashed. “Yes,” she said simply.

By and large, the doctor kept her word. We had a few minor incidents and only one major incident over the ensuing years. While the quality of the oncologist’s actions occasionally left much to be desired, the quality of her medical care was outstanding. She was clearly deeply invested in helping Sarah gain every additional day she could to raise her daughter. She never gave up, she never got discouraged, and she never ran out of treatment ideas, many of them cutting edge.

I have no doubt that she is a brilliant oncologist and her knowledge and commitment allowed Sarah to survive far longer than anyone’s most optimistic assessment. It’s difficult to reconcile that knowledge and commitment with the rudeness and disrespect of some of the encounters that happened along the way. In one way, though, it is not surprising. It is typical of the American healthcare system, combining brilliance, ingenuity and commitment with callousness and insensitivity.

* Not her real name