We are not Islands

As another hurricane has hit Texas causing flooding and loss of life, I think it is important to look at how we, as a society, treat the less fortunate.  Texas declined the medicaid expansion of the Affordable Care Act, and so its citizens are chronically at risk. This morning I read a review by Danielle Ofri, MD, of the book, "No Apparent Distress," by Rachel Pearson, MD (https://www.nytimes.com/2017/08/25/books/review/rachel-pearson-no-apparent-distress.html?_r=1).  In it, Dr. Pearson's stories about those who fall through the cracks are described.

I have spent most of my career working in "safety net" hospitals. Yet, even here, there are requirements for copayment. In the case of scheduled surgeries, copayment may be required in advance. Sometimes, this may be more than $2000. Clearly, a fee this high might cause a patient to question if they should wait. And many do. Sometimes, the disease will progress, and be more costly to treat. But, this usually affects primarily the patient and their family. And, often the taxpayer.

Medical diseases like diabetes and hypertension can also be far more costly if treatment is delayed. A common medication for hypertension costs less than $10 per month, yet a hypertensive brain hemorrhage may require a week in ICU at over $2000/day, followed by weeks of rehabilitation, and perhaps never returning to the pre-hemorrhage level of functioning. And, at the time of the hemorrhage, care is mandated by EMTALA (the Emergency Medical Treatment and Active Labor Act). So, again, we must all bear the increased costs of delaying care. While this is an unfunded mandate, doctors and hospitals must either recoup the costs or decide to go out of business, so they don't need to provide the care. But, closing Emergency Rooms affects anyone who needs one. So, this may affect all of us.

Infectious diseases pose even more of a threat to all of society. When I was a medical student, many of the homeless had been exposed to a non-toxin producing variant of diphtheria. Thus, if the typical toxin producing variant developed in the area, they and those who had received the DPT vaccine (https://en.wikipedia.org/wiki/DPT_vaccine) would be best protected. Since a booster is recommended every 10 years, many healthy adults would be unprotected simply because they didn't keep up with revaccination. But, this is just theoretical.

About 20 year ago, I took care of a toddler who had tuberculous meningitis. He was neurologically devastated by it. His infection was traced to a daycare provider with a chronic cough. This worker couldn't afford to take time off to spend at least half a day at a public clinic to have the cough checked out, so continued to work with children, who are the most likely to be devastated by tuberculosis. And, yet, how many of us pay for childcare? And, do we always check on the workers? Since these workers often are low paid, many are immigrants. 

Cysticercosis is another disease that may spread from the less fortunate. It is a pork tapeworm often encountered in third world countries. But, humans can have both gut and tissue, such as brain or eye, involvement. The gut involvement is caused by eating infected meat. The tissue involvement is caused by eating infected feces. Yet, pay for both agricultural workers and food service workers is low, so many are immigrants. In the field, workers may have no toilet facilities or bathroom breaks. Food service workers may also not have optimal hygiene. Health education is scant for such occupations with low pay and frequent turnover. Testing and treatment is rare. So, such workers may not only have tissue involvement, but, also gut involvement. So, all of us are at risk. In 1992, several Orthodox Jews were reported to have cysticercosis (http://www.nejm.org/doi/full/10.1056/NEJM199209033271004#t=article). 

We do not exist as islands. We interact with other people. We may eat meals prepared by others. Our children may be cared for by others. The most affluent may be able to have their domestic help tested and treated for various infectious diseases. Less affluent people likely can't insist on this. But, most of us, at least occasionally, eat food grown and prepared by others. So, if the least fortunate can't afford care, the more fortunate may also suffer. It is not only ethical for a society to help the less fortunate; it is also beneficial for the more fortunate.

Looking forward or looking back?

Today I had my, now semi-annual, visit with my oncologist. He ordered the usual surveillance labs and other tests. I have learned that some of these go through easily, some mean phone calls to my insurance. These phone calls are a nuisance for me. But, as a physician myself, I know how to phrase the reason so that things are approved. I know this is far easier for me than for an average patient. Yet, I worry that things will be harder in the future.

Every cancer patient has a pre-existing condition, as does every premature child, mental health patient, and many others. Before the Affordable Care Act (ACA), that meant that every person with a pre-existing condition could be denied coverage, forced to spend down their savings, and finally fall on the mercy of Medicaid, which differs some in the various states. They might then be limited in choices of providers. They finally would need to go to those facilities that are termed "safety net" hospitals.

I have spent most of my career working in safety net hospitals, teaching the next generation of physicians. I know we help a huge number of patients. And, we provide quality care. But, we sometimes lack in some technologies because we try to function on a shoestring budget. With the ACA, things eased a bit, since more of our patients had funding. But, still, not all technologies are available. In my case, my hospital did not have the ability to provide care had my disease turned out to be slightly more advanced. Yet, we often see patients with more advanced disease since they have tended to wait for care, if only because they might have to take a day off work due to travel time and waiting time, and so wouldn't be paid for that day. Even now, many patients miss appointments just to avoid taking time off work.

Waiting to see the doctor or have a test allows disease to advance. That makes it more costly to treat, and treatment less likely to be effective. Yet, plans are being made to force patients to have "more skin in the game" by forcing them to have higher costs when they seek care. Poor patients currently have relatively higher costs. So increasing their costs will force further delays in needed care, and so make US health outcomes worse. Last year, when life expectancy fell for Americans, poor Americans already had a life expectancy 14 years less than richer Americans (https://www.nytimes.com/2016/12/08/health/life-expectancy-us-declines.html). So, poor people have been putting their lives on the line with their health decisions.

Fortunately, I am able to have insurance and to argue for the care that I need. But, as a physician, I also have sworn to care for my patients, and will are for their care. And, I feel all people deserve quality health care. It is not a luxury, but a necessity.

Thanksgiving

Four years ago, about this time of year, I began to notice more abdominal problems than I had before. I put it to the back of my mind, and continued on, with work and family and friends. I had no idea that a little time bomb was causing this. I thought that maybe I overdid on eating more things that irritated my stomach. Especially this time of year. 

But, at the end of January, after another special meal for my daughter's birthday, the pain became more persistent. Still, I carried on for a few days, thinking it would pass. Finally, it was to the point that I could no longer avoid it. My little time bomb had exploded. My appendix had ruptured. And, so, my saga as a patient had begun.

Still, I thought, a couple weeks and I'll be back to normal. No, the little time bomb wasn't going to let my life return to normal. I had a drainage procedure and antibiotics to quiet down the ruptured appendix. Then, an appendectomy. This was even an option, as sometimes, appendectomy is not done after quieting down appendicitis with antibiotics. I decided that I wanted it out. I remembered a similar, far less severe episode years earlier. So that was scheduled. But, after things had been quieted with antibiotics. Only then did the little time bomb reveal its true nature. It wasn't simply appendicitis. It was cancer.

Even appendicitis isn't simple, though most of us in the developed world now regard it as a simple, treatable disease. When my symptoms began, I was only one year shy of the age of my grandmother's death from appendicitis. Hers had also ruptured. But, she wasn't so lucky. There weren't many antibiotics in her day. She became septic and died due to the infection. Now, that is less common. Antibiotics can treat many diseases that used to be fatal. But, the bugs are getting smart. We may again be at risk, or have to tolerate increased side effects from the drugs we use to treat infections.

But, back to me. After my appendix was removed, I had to undergo a bigger surgery, and then chemotherapy, because there was evidence of spread at that time. But, January will mark three years since the end of chemotherapy. I remain disease free. And, that is definitely something that I am thankful for today. I am also thankful for family and friends who supported me through this ordeal. And, thankful for a job that I could come back to when I was able. And lastly, I am thankful for the advances in medicine that allowed me to survive something worse than what took my grandmother's life.

The R word revisited

As I was browsing social media, I saw a blog written by an American doctor who had to take a cousin to a National Health Service (NHS) in Britain (https://drjengunter.wordpress.com/2016/08/20/an-american-doctor-experiences-the-nhs-again/). She reports that he cousin's ankle injury was evaluated and treated in 4 hours. There was no copay. The patient only had to give her name and birthdate. Overall, the report is positive about the NHS.

A friend was visiting Germany, when her daughter had a minor eye injury. Within about 4 hours, on a weekend, the child was seen and evaluated by a the emergency physician, who called a pediatric ophthalmologist. A few years later, the same child had a head injury on a trip to Austria. Again, positive experiences with minimal if any copays.

Yet, here in the US, I just mailed billing sheets for my son's treatment. Again. They had to be revised, since the insurance company wanted things written up differently. And, I know that, since I haven't yet made the yearly deductible, I won't be reimbursed for his treatment by an "out of network" physician. As I was preparing to send these bills in, I noticed that the yearly "maximum out of pocket" has again increased, now to $25,000 for the family.

Earlier this month, I had a $2,000 copay for a minor surgery, which was collected in advance. If I hadn't been able to pay, the surgery would have been delayed or cancelled. Earlier this year, I had to pay a similar amount for a PET-CT.

I'm fortunate, in that I am again in good health, and able to return to work. I also had adequate savings, but, these kind of charges are a challenge for many people, even middle class people with insurance. As a result, care may be delayed. Sometimes, the problem will resolve as people work to come up with the estimated copays. Sometimes, it will get worse. As physicians, we work to sift out those who will resolve, and not subject them to expensive procedures. Often we are right. But, not always. And, so sometimes the problem worsens.

In July, we had a patient scheduled for a surgery for what was thought to be a slow growing cancer. She had some delay due to the preapproval process. By the time of surgery, only a few days after I had met her, another scan showed a marked increase in the size of her tumor. Hence, the plan for treatment had to be changed significantly.

These copays and "maximum out of pocket" expenses are a major limit in health care. It is a reason that many diseases are not treated until late in their course. The Affordable Care Act has helped millions, but the problem is not solved. The egress of insurance companies is not because the ACA is failing, but rather because they want more profits (http://www.marketwatch.com/story/aetna-obamacare-and-health-insurers-10-dirty-secrets-2016-08-19?mod=mw_share_facebook).

We still have a system that is flawed. It still makes it difficult for many to get needed care. And bankrupts many who try to pay. But, it is better that what it was, even if more changes are needed.

Saved by love

About a decade ago, I started on the process to adopt two children. I had always wanted to be a mother. After two years of paperwork, I finally became a mother. Once my two came home with me, the older one kept trying to persuade me to go back and get more kids. He told me how lucky he and his sister were to have been adopted. It was a nearly daily plea.

I learned of the likely fates for children who age out of care. Far too often they end up in prostitution or drug running or enslavement. Without a family to protect them, and limited skills, they have few other options. 

I looked into starting the process again, but roadblocks kept being erected. The country my two came from, Kyrgyzstan, was closed for several years while a new government worked on rewriting the process. I looked into other countries. But, between political issues in several countries, and my work, it never came to pass. So I just have my two.

Then, another roadblock: cancer. Due to my age, this diagnosis essentially made it impossible to consider adoption again. 

After my hemicolectomy, I had very poorly controlled pain. To the point, I almost felt that I couldn't go on. I remember wanting to die. But, then, I would think of my kids, and the responsibility I had taken on of raising them to adulthood, and I knew I had to go on. I knew I had to get through this.

Last week, in a conversation with my son's therapist, I expressed my gratitude for being saved by my children's love. It kept me going in my roughest time. 

Family is especially important for patients. Not just in the physical sense of transportation to appointments, but, even when they are not physically with the patient, knowing that they want to love and support the patient. I certainly got that from my children. Without them, I think I might have simply given up.

Graduation Day

Last week, I had a graduation of sorts. I had my chemo port removed. It hasn't been used for anything but blood draws for over two years. So, after being free of cancer for over 3 years, it was time to remove the port. My oncologist kept suggesting it. But, I kept dragging my feet, worried that it would need to be replaced.

About three months ago, I was rounding with residents and medical students. One asked about using a ventriculoatrial (from the ventricle of the brain to the atrium of the heart) shunt in a patient on our service. She had hydrocephalus with a history of shunt infections, so would not be a good candidate for a ventriculoatrial shunt due to the complications of renal failure or sudden death which may occur in the setting of shunt infection. A ventriculopleural (from the ventricle to the space around the lung) handles infection the best. Ventriculoperitoneal (from the ventricle to the abdomen) shunts are the most common type for managing hydrocephalus.

And, as we were walking down the hallway to the clinic discussing the risks, it hit me. I was living with a catheter in contact with my blood stream, like the distal catheter of a ventriculoatrial shunt. And, mine was violated to draw blood and flush it every 2 months, increasing the risk of infection. So, here I was, choosing to live with a catheter that had features in common with something I thought was too risky for my patient.

The next time I saw my oncologist, I told him that it did seem to be time to remove my port since it no longer seemed necessary. He put in the referral. And, this past week, I had the surgery. The pain has been minimal. I just notice when clothing rubs on the newly opened wound, or I move my arm a certain way. But, I feel that it is closing the chapter on this phase of my life.

Cancer will always remain part of my past medical history. I will need to have regular follow ups and imaging studies. But, it doesn't rule my life. Unfortunately, my patient will never be able to eliminate her device. She must live forever with a shunt. But, recently, she, too, had a turn for the best. Her spinal fluid was cleared of infection, a permanent shunt was again placed and she was discharged from the hospital.

So, we both have "graduated" from our recent problems. And, we are able to live more normally again. 

Human experimentation

I recently saw an article on repair of vesicovaginal fistulae (http://www.npr.org/2016/02/16/466942135/remembering-anarcha-lucy-and-betsey-the-mothers-of-modern-gynecology). As a surgeon, I found this bit of history interesting. Surgery during the 19th century was difficult. Ether was first demonstrated in 1846. The surgeries on the slave women were between 1845 and 1849. It is also worth reading an article by LL Wall on the ethics of Dr. Sims work (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2563360/).

Since I'm not a gynecologist, I thought I needed to read up on the condition. Vesicovaginal fistulae, and rectovaginal fistulae, are a complication of childbirth and still a scourge in the third world (http://www.ics.org/publications/ici_3/v2.pdf/chap22.pdf). Most of the most dangerous countries for pregnant women are in sub-Saharan Africa, where poor women have limited access to obstetrical services, and so may suffer the consequences in terms of maternal death or fistula formation.

Anesthesia wasn't the norm for anyone in the first part of the 1800s, but became more common in the second half of the century. Only later did Dr. Sims use anesthesia, when it became standard. By that time, he had moved to New York and had a nearly all white clientele.

Throughout the south, slaves received varying levels of medical care, some reasonable for the time, some not. The owners gave consent. A friend visited one of these slave hospitals and she said that it reminded her of a veterinary hospital. But, at the time, alternatives were limited.

The standards for risk in clinical research have evolved over time, mostly since WWII, with the human experimentation on Jews, Poles, Gypsies and others by German physicians, and the Tuskegee experiment, and others, such as radiation experiments (see The Plutonium Files by Eileen Welsome). In all of these cases, the "research" had no intention of helping those subjects. I grew up knowing one of the survivors of the German experiments. She suffered from the sequelae for her entire life.

When I started my fellowship, in 1989, I remember the statement being made that an average of 1 person per year died as a result of experimental chemotherapy protocols that were being studied at my institution. Given the type of tumors we studied, without treatment, nearly all would have been dead within a year. Refining treatment has added months, or in some cases years to their average life expectancy.

I remember my patient. She was in her 20s and had a very aggressive type of tumor. She was white and middle class. But, her life was made shorter by the treatment she received. Do I feel responsible? Yes. Can I live with myself? Yes. I know she was on a protocol that was thought to possibly help her, as well as possibly helping more patients in the future. 

So, within limits, I think it reasonable to take some risk.

Certainly slavery is unacceptable. As is experimentation which has no chance to help the patient, yet has significant risk. But, there must always be a first patient or medicine can't advance. So, we try to help those for whom there is no other treatment. I would consent to a trial when I had no other option for treatment of myself or my children. It might offer us some benefit, and hopefully will help to create better treatment for future patients.

Did Dr. Sims put these slave women at risk? Yes. Might they have benefited from treatment? Maybe. There was no other option at the time, but to live with urine, and possibly feces, always dribbling out. Were these surgeries unacceptable? I don't know. Certainly, it is appropriate to acknowledge the patients.