Sunday, May 17, 2015

The costs of living

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.

Paul Kalanithi

Recently I saw an article about a young Stanford neurosurgeon who wrote and videoed some of his thoughts about being a patient and a neurosurgeon. He died at 37, barely starting his career and his family. Yet he felt a need to express his feelings about life, and death. Here is a link to an obituary about him:

Friday, May 8, 2015

A delicate balance

Surgeons deal with patients who have pain on a daily basis. But pain is not a simple issue. It begins with nociception: the sensation of tissue being damaged. It causes us to recoil from whatever is causing the damage, whether it is a thorn in the foot or the heat of a fire. It is something that is designed to protect us from injury by letting us know about it quickly. From there, we add layers to the experience. Initially these may be helpful, teaching us to avoid the source of pain, but sometimes they are not. But, sometimes, people develop behaviors to manipulate others to assist them. Sometimes these behaviors even make people feel miserable from pain behavior long after the nociceptive impulse is gone.
Patients with pain behaviors out of proportion to pain and those with addictions make surgeons leery about prescribing narcotics for pain. The legal system reinforces those fears. But, more recently, there are also laws requiring the treatment of pain. And, we must remember, as physicians, one of our tasks is the alleviation of pain.
So, how does this balance work in real life. I would say that most of the time it works pretty well. Most surgeons, and other physicians, become pretty skilled at guessing the amount of pain medication a patient need. Guidelines are available based on patient size, and physicians use their experience to adjust these at times, based on knowledge about the patient.
But, what about when we are wrong? Overdosage can be disastrous, but fortunately, is most often treatable when recognized in time. They can become addicted or sell the unneeded drugs. There can significant penalties for physicians who do, including loss of license or prescribing privileges or worse.
Underprescribing can leave the patient in pain, and sometimes teach a patient to hoard narcotics or seek out other sources. It can also lead to longer hospitalization with its inherent risks and more outpatient visits. And, more states are enacting legislation requiring physicians to provide adequate treatment of pain.
Fortunately, I have never experienced an overdosage as a patient. But, I have experienced undertreatment of pain twice. The first was many years ago, before I was in medicine, when I thought I was tough and declined a narcotic prescription for a fracture. I had never used prescription pain medication before, despite some other injuries. A couple days later, I returned, thinking I would be prescribed the meds I had declined earlier. My chart was not immediately available. I was accused of drug seeking and not given a prescription. I weathered that injury with over the counter medications. And, like many patients, I decided that it was a mistake to decline a prescription, and would accept them, even if I didn't think I needed it. After all, I could decide if I needed to fill it.
The second was more recently. I had an epidural placed that seemed to have no effect, except to cause an allergic reaction to the tape used. In recovery, I told the recovery room nurse that I was in pain, and rated it more than my previous 10/10. Her response was to tell me that since I had an epidural in place, I should have no pain. And when I asked her to get the doctor and suggested that I needed medication, and even suggested a few that I have prescribed in similar situations, she disdainfully suggested to the the doctor that, "she even knows the names of several narcotics." The resident then informed her that I was an attending surgeon at a neighboring hospital. The poor nurse, who hadn't noticed that in her review of my chart, turned bright red. Since the pain was inadequately treated, I was afraid to move. Fortunately, I did not develop a pneumonia or venous thrombosis as a result, but many patients do when they aren't mobilized in a timely fashion.
I recount these two episodes simply to suggest that patients may ask for pain medication for legitimate reasons. I certainly understand the reluctance to overprescribe. But, there are also problems with underprescribing. We must observe our patients carefully so that we can appropriately adjust dosages. It is a delicate balance.