Even though I have had health insurance continuously since finishing training, I found the costs of illness significant. So that the costs of care cancelled my income for working nearly half a year. No wonder so many people have gone bankrupt due to health care expenditures. This was a major impetus for health care reform and the Affordable Care Act.
Fortunately for me, my savings and those left me by my parents allowed me to weather the costs fairly well. Yet, it has been a continual worry. Will I outlive my savings? Will I be able to afford education for my children? And, this has continued since a full return to the operating room still looks far off due to complications of chemotherapy.
Now, I am staged as no evidence of disease. A cause for celebration. But, my life is still disrupted by the fact that I have a neuropathy. My hands and feet are numb and tingling. I am sometimes unsteady when I walk. Fine motor skills are still more difficult. Will this get better or not? Will I need to find a new career? I am too young to retire. And I still have two school aged children. How much retraining should I consider? No one can answer these questions. When I see the neurologist, I am simply told to “wait and see.”
But, I must live while waiting. And if I am away from surgery for too long, hospitals will worry that I have lost my skills. So, even returning to the profession I have practiced for over 20 years will require retraining. And, then there is the issue of endurance. Neurosurgery, and most surgical specialties, are physically demanding. I know my endurance is not normal. I have heard from other patients that it may be decreased for years. So, is it even reasonable to consider a return to full time practice?
It is hard to struggle with these questions. And, yet I know that I have been fortunate to have the resources to have continued without major disruption for my children. Yet, they, too worry about the future. They worry what will become of them if I die. I have tried to reassure them that this has been taken care of. And, that I plan to live to see them grown and on their own.
Many cancer patients don’t have the resources that I was fortunate to have. For many, it becomes a struggle to make ends meet. Fortunately, now there is a cap on medical expenses for nearly all Americans. But, that is only half the story. Expenses like rent, food and utilities continue. And without an understanding employer, a job may be lost, or pay cut, pushing families even closer to the edge. And, sometimes, this can make it difficult for a patient to continue with treatment.
Years ago, I had a patient, a child whose parents were unable to provide the care he needed. So he was bounced from relative to relative, missing or delaying his treatments. I remember wishing that I could just take in this child, so I could make sure he made it to his treatments. But, I knew that would become a full time job. That is what his relatives had struggled with. All of them were barely getting by financially. They couldn’t afford to take the time off work to care for this relative. Perhaps, if they had been able to coordinate, they would have. But, no one individual could support themselves and provide the care this child needed. So, I saw him dwindle and eventually die. He succumbed to a type of cancer that is often treatable with good success. I do think the lack of a social support system cost that youngster his life.
Another child, through her treatment, caused her middle class family to slip from a comfortable existence to needing public assistance. A part of this decline was due to direct medical care costs. It was also due to the costs of lost wages from her mother taking a leave of absence and her father cutting his schedule to part time because of health insurance costs for a small business. A larger pool could have prevented this. And then, her mother, desperate for care for a second child, said, “I know my child is dying. I wish she would just die. Only then can our family rebuild our future.”
Other patients, fearing that they might have cancer delay treatment because of the non-medical costs of treatment, and often shorten their lives.
These costs are one of the reasons for cancer outcomes to vary by socioeconomic status. The poor may not have the reserves or support system to fall back on to make it through treatment. Fortunately, so far, I have had the resources. But, I must now plan for the future. I have returned to work, but not full time. I know that the work may have to be different for a long time. Sometimes, I wish writing could support my family. But know that I am a long way from that.
Margaret Wacker is a neurosurgeon.
