Despite the fact that I have been a psycho-oncologist for nearly 25 years, I still marvel at how well people cope with and adapt to even the most dire of medical circumstances. Not being a patient or survivor myself, I sometimes think that if I were confronted with my mortality, I would not be able to wash the dishes, look for parking, stand in line at the supermarket, or stay on the phone if put on hold. The sense that I was wasting precious time on trivial matters would make those tasks hard to bear. Maybe this is why, after debating whether humans should be born with foreknowledge of the date and time of their death, the Greek gods decided that we could not handle this information.
What patients like Mr Feit are going through is virtually unprecedented in human experience. In the past, when someone became ill with a fatal disease, it was usually infectious and death came quickly. Nowadays, people with cancer learn that they have a lethal illness, but it will take many months or even years to claim their lives. They try hard to adjust to this sword of Damocles hanging above their heads. They work to make meaning, try new things, and live fully, and they even carry out the most trivial tasks with grace and courage. Where would spending endless hours on the phone with managed care companies, prescription services, and other bureaucratic representatives rank on your bucket list, if you walked in your patient’s shoes?
I have a job because of the work done by many of this journal’s readers. My oncology colleagues have gradually been turning cancer—even stage IV cancer—into a survivable and/or chronic disease. Thus, psycho-oncology services and many other aspects of supportive care have assumed central places in the care of the person with cancer. While oncologists should be proud of their accomplishment, living with cancer is no walk in the park for our patients. They live on chronic therapy, often symptomatic, even as they work to maintain their relationships, career, and identity. The drain gets harder and harder to deal with over time. Not that my patients are ungrateful, but they do get worn down by the experience and sometimes wonder if it is worth it. The need to spend precious time and energy on filling out forms and phone calls in the midst of all this is crazy-making for many of them. Fighting denials, talking to a different bureaucrat each time, and waiting on hold for interminable minutes is par for the course, right up to the final days of life.
Why hasn’t our healthcare system kept pace with modern medicine? Why have we not evolved a system of healthcare that is geared toward the needs and priorities of the chronically ill? And why haven’t today’s health insurers developed systems to deal with their paying customers, particularly those with exhausting, chronic, life-threatening diseases, with compassion and humanity? Why don’t processes get easier for these patients as their disease goes on rather than become increasingly draconian? Why isn’t there a system in place to pay for their psychological and supportive care?
More and more deadly diseases are slowly being transformed into chronic conditions. This is especially true of cancer. The issues that Mr Feit and our other patients are dealing with daily are not going to go away on their own. We need to lobby for reform and change so that our patients are only the beneficiaries, and never the victims, of our success.
Write the White House. Call your congressional representatives. And don’t hang up if someone puts you on hold.