Seeing the Person in the Patient: A Doctor’s Perspective on her Daughter’s Cancer Treatment
Jennifer P. Schneider, MD
Published in Internal Medicine World Report, Feb. 2004
In 2001, my daughter Jessica, then 29, was diagnosed with metastatic colon cancer. With 20 years’ experience practicing internal medicine, and many years of managing chronic pain, I thought I knew what a very ill patient goes through. I couldn’t have been more wrong. Learning this lesson through my own daughter’s illness was a terrible experience. I hope that by telling it to my colleagues, they will gain some insight on what to do, or not do, when caring for dying patients and their families.
Jessica, a graduate student in Columbia University’s film program, was a healthy, physically active young woman. Her diagnosis was a shock, and as soon as I heard, I flew from my Arizona home to New York City, where she lived. There, I made an appointment for her at a well-known cancer center that had pioneered what was then the most promising chemotherapy for metastatic colon cancer.
Over the next two years, Jessica received the best that medicine could offer, which was not necessarily the best that medical care could provide. Chemotherapy shrank her tumors and allowed her to feel normal again for some months. Later, there was extensive abdominal surgery. Eventually, as new metastases were found, she endured more treatments: radiation to her neck for bone metastases; more chemo; whole-brain irradiation for brain metastases; and hospitalizations to remove fluid from her lungs. Lung metastases progressively shortened her breath; she weakened, and she died in July 2003, days short of her 32nd birthday.
At the time of her diagnosis, Jessica had just begun composing “Lost,” a modern opera based on the story of Hansel and Gretel. She was determined to finish it before she died. Although she took a leave from her graduate studies, she continued to write, bringing her laptop with her to chemotherapy sessions and to the hospital.
As her disease progressed, Jessica knew that she would not survive to finish the music, but this only motivated her to work harder. I was with her during her last few days. By then, she had hired a music director to help her, and e-mailed final instructions the day before her death. Her musical, “Lost,” opened three weeks later. NBC’s Today show ran a piece on Jessica, her struggle, and her music.
The completion of her musical was wonderful. But here’s what she went through along the way. Jessica’s primary oncologist was knowledgeable and kind, if a bit formal. Doctor “A” devoted all of Jessica’s first appointment to describing treatments, but no time getting to know Jessica as person. Jessica, shy under stress, kept silent. When her father asked about an alternative drug, Dr. A replied, “Oh, Jessica will eventually visit with oxaliplatin, and several other drugs as well.” I was the only other person in the room who realized what Dr. A was really saying: Each chemotherapy drug was likely to work only for a while, and eventually she would go through a list of all the promising colon cancer agents.
In the end, however, Dr. A was a great support to Jessica, responding quickly to her phone calls, providing detailed explanations, and answering lengthy emails from her family.
Such was not the case with Dr. “B”, to whose care Jessica transferred when Dr. A took a leave for several months. Dr. B was well-known for his expertise and research on colon cancer treatment. Unfortunately, an efficient researcher does not always make for an empathetic physician. He never returned phone calls, but rather had his nurse or secretary call. His office declined my request to see him while I was in New York. He would not take phone calls from family members, even if the patient had requested he do so.
Office visits with Dr. B consisted primarily of him announcing what his next plan was. He did not ask if Jessica had any questions, nor did he ask anything more than about her reaction to the treatment.
Jessica saw several other specialists for complications of her illness. During her appointments with Dr. B, he sometimes appeared to be unaware of what recent tests or therapies she’d undergone. Jessica felt that no one was managing her care. She told me, “There’s no captain to my ship.”
She enjoyed a real contrast in the person of Dr. C, whom Jessica saw for treatment not available through Dr. B’s institution. Dr. C. wanted to know all about Jessica. He scheduled treatments around her planned vacations. Dr. C called her personally when important test results came back, and returned her phone calls promptly. He welcomed the involvement of her boyfriend and family.
After her death, Dr. C, his assistant, and Jessica’s chemo nurse, all of whom she had come to know well, came to see a performance of her musical.
Jessica’s stress (and mine) was compounded by long and pointless waits at doctors’ offices, cancer centers, and hospitals. Every doctor’s appointment meant a wait of at least an hour. Every chemotherapy session took six to eight hours. Patients who felt weak and ill and would rather be at home, and patients whose remaining life was measured in months or weeks, were wasting precious days sitting in the waiting room.
We wasted even more of our precious time arguing with insurance companies. At one point, her insurer would only cover a medicine administered in an inpatient setting, even though Jessica’s boyfriend had been trained to give it to her at home.
I spent hours getting the insurance company to see the absurdity of the situation and to authorize payment for the outpatient injections. (I pointed out to them that a single hospitalization for sepsis would cost them far more than the drug).
Jessica was lucky because I could advocate for her with insurance companies and, if necessary, pay for expensive medications. But what of other ill and dying patients who don’t have such an advantage? One week before Jessica died, we spent half a day finding documentation for her latest application for financial aid from the hospital. She called out instructions to me from her bed about where to find each document. After she died, I so regretted that we had spent that our precious time together chasing down papers rather than in a more meaningful way.
Receiving adequate pain relief proved to be a nightmare in some instances. During her first hospitalization, there was a hour’s delay after Jessica awoke in the recovery room before we were allowed to enter. She was crying and screaming with pain, and the staff wanted her to be calmer before we saw her. Tragically for Jessica, post-operative medication orders were being written by a young pain management trainee, who did not understand the basics of prescribing opioids for patients already on large doses. He was afraid to order more than the cook-book amount listed in his guide, and despite Jessica’s pleas for relief, was unwilling to call his supervisor for assistance. It was only because I myself am a pain management specialist that he would even discuss the situation with me but the additional medication he was willing to order was still not nearly enough. The next morning, Jessica finally got enough pain relief when a more experienced pain management doctor showed up and quadrupled the dose she was getting. Even in a major teaching hospital, patient care is only as good as the weakest link.
It will take me years to fully understand the lessons for me in all of this, but I do know that I have a far clearer appreciation of what patients endure. Ill and dying patients often are able to cope only as long as no one throws a monkey wrench into their life. Additional stresses can bring a patient to tears. Efforts to straighten out bills can take up a great deal of time and energy. Patients’ quality of life should be a prime consideration in dealing with them. The medical system should be trying to make their remaining life as hassle-free as possible, not add to their burden.
Doctors are often reluctant to talk about death. They use euphemisms and indirect references. After Jessica died, a physician colleague expressed sorrow that she had “passed on.” People became uncomfortable when I’d say that Jessica had died or was dead.
It’s trickier when it comes to speaking with cancer patients whose prospects for survival are poor. At first, Jessica did not want to hear any statistics or prognoses, just that there was a treatment plan that would help her. With time, as she adjusted to the realization that her disease could at best be controlled for a time, her goal became to survive long enough to complete her opera; she needed more information about her prognosis in order to be able to make realistic plans.
A physician needs to be sensitive to where the patient is along the path of accepting the reality of their disease progression. I wouldn’t recommend telling a patient who’s just been diagnosed, “You have only a month to live,” because we physicians are so often mistaken. Find out what the patient’s goal is. This is likely to change with time. Giving them hope is crucial at every stage, even if the best we can offer them is hope of a comfortable end. The most important thing is to be sensitive to the patient’s emotional state.
As Jessica’s mother, every day I will remember that my daughter died. She was a beautiful and brave soul, and I hope that her story inspires my colleagues to do more, and learn more, about how to care for the dying.