Two days before I was supposed to fly to San Francisco for my father’s 80th birthday, my mother was diagnosed with stage IV adenocarcenoma of an unknown primary. (For you non-medical types, that means she had cancer of the epithelial cells that line our throat, stomach, intestines, and reproductive organs; it had spread to multiple locations, but they didn’t know where it had started.) When Mom – who was the opposite of a hypochondriac – had complained of not feeling well, we had of course urged her to see her doctor. That was in late January. She did not get an appointment until early March. By then she had lost weight and was having trouble breathing. Upon seeing Mom’s condition, her primary care physician checked her into UCSF hospital, where they drained several liters of fluid from her abdomen and both lungs. It took another week for the test results to come back with the diagnosis. When I got home on March 19th, Mom’s belly was distended. She could not eat. She could not have a bowel movement. She burped incessantly. Instead of a big birthday celebration it was just Mom, Dad, my brother Victor and myself in a house stiffled by worry. Mom managed to force down one small piece of mango birthday cake.
The prognosis had been 6-9 months, but Mom was always faster than anyone expected. She left us only seven weeks later, one day shy of Mothers Day.
I know that when people are grieving we often look for someone or something to blame. I know that Mom’s cancer was diagnosed very late, and even if the health care system had worked perfectly for us, Mom likely still have passed away from us too soon. But I don’t think it’s unreasonable to note the numerous ways in which the health care system made what little time we had left with her that much harder for us. And all the while, I have to remember that we are the “lucky” ones who have health insurance. Mom was covered under an HMO.
First, there was the matter of the referral. Mom’s primary care physician had written a referral for her to see an oncologist. But when I called the number on the slip to make an appointment, I was informed that before we could have one we needed more tests in order to try to pinpoint the primary location of the cancer. “You can’t be serious,” I exclaimed, “She has cancer; she needs to see an oncologist immediately.” The woman on the other end of the phone “explained” that “all the oncologists at UCSF are highly specialized,” some specializing in lung cancer and others in colon cancer, etc. Without knowing the “primary location” of the cancer, she did not know which oncologist to refer Mom to. After a little more back and forth, it became clear that I was not talking to a doctor, but an HMO bureaucrat, one that had the power to decide whether my mom could see a doctor or not.
Two additional tests were required. When we tried to schedule these tests, we were given appointments three weeks later. Three weeks for the test, another week for the results… a month. And in the meantime the cancer was growing every day.
At this point a family friend who is a doctor explained to us that “in-patients” automatically get priority for procedures over “outpatients,” even if the outpatients have a time-sensitive, life-threatening disease. With that knowledge, we checked Mom into the hospital in order to speed up the process. It wasn’t hard to get her admitted. Mom was now vomitting on a daily basis. But being inside the hospital presented its own challenges. Instead of familiar family surroundings, the hospital was stuffy, cramped and depressing. Mom shared a room with a woman who apparently screamed in her sleep, keeping Mom up at nights. During the day, there was little for her to do other than wait for visitors (of which there were thankfully many). It was not an environment conducive to remaining in good spirits, which is essential to maintaining health.
Over the course of Mom’s five weeks in the hospital, we saw numerous doctors – so many that we could not keep track. Different doctors looked after different parts of her. A team of oncologists conferred regarding her cancer, but would not start chemo while Mom was still in the hospital. A surgeon and his students stopped by briefly each day to check on the status of her blocked bowel, but claimed that they could not operate so they did nothing other than stop by. Every procedure, whether ultrasound or CT scan, was handled by a different department. And Mom was gurneyed from one location to another by attendees who left as soon as they reached their destination, whether the receiving end was ready or not, sometimes leaving Mom out in the hall as if she were a package. One doctor was supposed to watch over her overall health, tying it all together. But that position was filled by a different doctor each week, so that each time we started over again with someone unfamiliar with her case.
To be fair, some of the nurses and doctors were wonderful, displaying real compassion and attentiveness. But far too many were not. There was the oncologist who, when my brother mentioned that he had been researching Mom’s cancer online, shook his head in disapproval. When my brother said we were seeking a second opinion, his response was, “Yeah, good luck with that.” There was the doctor who drugged Mom into a three day delirium, prescribing one anti-nausea medication after another instead of considering that the approach wasn’t working. When we voiced alarm, we were told that it was “common for senior citizens to show some delirium,” ignoring the fact that we knew OUR mother had been mentally sharp until only a few days before. There was the doctor who, when I questioned some decisions that had been made, beligerantly suggested that I was making random acusations. There was the nurse who decided to “test” Mom’s condition by waiting to see if she could stand without assistance, despite my informing him to the contrary and despite Mom’s cries of distress.
Above all, the most frustrating thing was that once in the hospital, we were caught in a catch-22. The cancer had created numerous secondary ailments – a bowel obstruction that resulted in vomitting, ascites (fluid buildup in the abdomen and lungs) which caused painful distention and hampered her breathing, and edema (swelling of the lower limbs due to poor nutrition). As long as we were in the hospital, Mom could not receive chemotherapy because chemo was for outpatients only. Nor were we allowed to try alternative treatments such as acupuncture or homeopathy because of the liability issues it presented. But without the chemo or any other treatment, Mom’s cancer multiplied unchecked, causing the symptoms that were keeping her in the hospital. As long as she was vomitting, they kept her as an “inpatient,” pumping her full of anti-nausea medications that impaired her mind and were only addressing the symptoms. It was madness.
Little by little, yet all too fast, Mom grew so weak that chemo was no longer an option, even if her bowel obstruction had spontaneously recovered. In her last days, her kidneys started to fail and in her last hours her lungs filled again with fluid. She died of respiratory failure at 6:50 am, May 9th, 2009. After talking with the doctor on call we gathered up Mom’s belongings and left at about 8:30 am. An hour later at home, the hospital was on the phone telling me that we had to come back in order to sign the release for the body. “Why,” I asked incredulously, “didn’t you tell us this during the hour and a half that we were still there?” It was indicative of every frustration that we had experienced during the last seven weeks. Only this time, they had nothing to hold over us. I refused to return. Another hour later, they called again, this time saying that we didn’t have to sign at the hospital after all and could do so with the funeral home.
I won’t go into the details of Mom’s funeral, except to say that in almost every way our experience with the funeral home was far more pleasant than with the hospital. The employees were kinder. Every person that we worked with seemed to know Mom’s case. Instead of telling us what we couldn’t do, they went out of their way to meet requests. Obviously, funeral homes are businesses and depend on satisfied customers. But shouldn’t a hospital want satisfied customers as well? As I said, I am at terms with the fact that Mom’s time here was up, but our last days with her could have been so much less unpleasant than they were. From my family’s perspective, there is little that is healing about the health care system.