Working in the pandemic

Many areas that are being hit hard with COVID19 are asking for retired physicians, nurses, respiratory therapists, and others to return to work. Some areas are using the retired professionals for remote work, others want the retired professionals to return to active practice. Recently, the AMA gave some guidance on retired physicians returning to work (https://www.ama-assn.org/delivering-care/public-health/6-keys-retired-physicians-considering-return-practice?utm_source=fbpage&utm_medium=social_ama&utm_term=3239951300&utm_campaign=Public+Health).

Even though I have not yet retired, I have been concerned due to risks since I am a single parent with several factors increasing my risk. I am not someone who is not an internist or intensivist, but I have had some experience in intensive care. I have been trying to do as much as possible remotely, and feel that is best in my situation. Yet, I feel some guilt that I am not shouldering my responsibility. Yet, I also have a duty to my children who worry that I may die and they would be "orphans again." I told them that I will try to stay safe and that, since I had a respiratory illness already this year, that I may have already survived it and be immune. I would like to confirm that with testing, and feel that if I am immune, I would have less worry about the illness. I hope that is the case. 

Pandemics

While I wasn't live for the 1918 flu pandemic, I recall the glory years of antibiotics and vaccination in the 1960s and 1970s when it looked like infectious diseases would be controlled and no longer kill on a large scale. Then came the 1980s and it became obvious that was not the case.

When I was first starting in medicine, a lot of young men were dying of a strange disease. They tended to be from certain neighborhoods, like West Hollywood in LA or the Castro in SF. I remember that it wasn't even clear initially that it was an infectious disease. It took a while to sort out, and a lot of activism to get enough funding to develop a test for it and later a treatment. An excellent book on this history is Randy Shilts' "And the Band Played On."

I remember my colleagues being afraid to treat patients with AIDS, as this new disease became known. They were afraid of the infection and the inevitable death. I remembered my mother, who as a nurse became infected with hepatitis. It went on to become chronic active hepatitis. That taught me that my choice of medicine as a career was not without risks. Yes, I would use precautions, I would double glove, but I would not refuse care.

Finally, in the 1990s, a treatment was discovered for HIV, and it became a manageable disease. So, healthcare personnel became more comfortable treating HIV patients. And, we became more used to using more protective equipment.

In the last couple decades, we have had a few pandemics. Several have not made it to the US. We have become better at managing these pandemics. Yet each has cost too many lives. Now, we are again seeing something that kills a lot of people, though not as many as HIV in the early days. The mortality is greater than most seasonal flu illnesses, maybe in the range of the pandemic of 1918. And, it is a new virus, so none of us are immune. It has spread faster, and has overwhelmed health systems, forcing doctors to choose who they should treat based on who they have a chance of helping. While we are all taught the concept of triage--dividing patients into those who will survive regardless, those who will die regardless, and those for whom treatment will make a difference--it is rare to have to make these decisions. And, healthcare personnel are becoming infected and dying, despite knowing to use PPE (personal protective equipment).

Leaders have not understood the seriousness quickly enough. Again, many people will die as a result.

The Monday Crowd

Tomorrow, I will see my oncologist again. On a Monday. Most of my chemotherapy was on Mondays.

Several other patients also seemed to follow a Monday schedule. As we waited in the for our treatment, or when we were bored with sitting in a chemo chair and decided to walk around with an IV pole, we would chat. We became an informal support group. We talked about our families, and about our disease and treatment. Three of the people had known each other for a while. Two had recurrent cancer, one, a chronic anemia requiring frequent transfusions.

One of the patients with recurrent cancer seemed to be failing his salvage therapy, looking worse and worse each time he came. He had had a long battle, beginning a few years before I met him. During those years, he had quit working and closed his business, putting a few others out of work. But, he had no choice. He just didn't have the energy anymore. He knew that he was nearing the end. I would guess that he has died.

The other was a young woman, first diagnosed with an unusual cancer in her twenties. She had also recurred, but she seemed to be doing well. Her attitude was clearly to live life to the fullest. I haven't seen her for a while, but now only go in twice a year for follow-ups, and often not on a Monday.

The man with chronic anemia I also have not seen, but this could also be due to my schedule.

While I can clearly remember each of them, I doubt that I will learn their eventual fates. While we shared our souls, we did not share our addresses, whether physical or electronic. These people helped me get through chemotherapy. They helped me to survive. I hope that I can play forward what they have given me, and help others through their treatment.

We were "The Monday Crowd." I hope there is a new "Monday Crowd" helping each other get through. And, other groups on other days. 

Survivors

Recently, I looked around at my colleagues, at least 5 of them had had cancer in the past, but were working full time in demanding careers. Other colleagues have had cardiac events. Others had ongoing medical challenges such as rheumatologic diseases. Two of my medical school classmates had multiple sclerosis. One of my professors was quadriplegic. A good friend, my daughter and I were all premies, and all have negligible residual difficulties. Another good friend and another family member have suffered from depression, yet go on with life.
Fortunately, we are all survivors. Yet, we all have preexisting conditions. And, that may put our financial lives at risk (https://www.npr.org/2018/06/08/618263772/trump-administration-move-imperils-pre-existing-condition-protections), and thus, our real lives. We might be forced to pay much higher premiums, or accept a cutout for a potentially expensive disease. And, spend down our savings until we are eligible for Medicare.
No one gets out of this world alive. And, for most of us, death is preceded by illness or injury, which is also very costly. So, elimination of the protection for pre-existing disease will affect most of us. When I was going through active treatment, I became close to several other patients. One had a recurrence of a similar type of cancer to mine. He had lost his business and his house. He opted to not continue with treatment lest his wife be left bankrupt. Another was a young man, a single father. He, too, lost his house and his job. He started driving for Uber on days he felt well enough. A woman, barely 30, was also facing recurrence. She and her husband were struggling to prepare their children for the inevitable. I had costs that would bankrupt most. So far, I am afloat, but, may need to sell my house and downsize sooner than anticipated, before my children are out of high school. Some of this is due to my job forcing me, since my cancer, to continue to work part time, for half the pay I had before. This is also not uncommon, but adds to the financial stress faced by patients.
Facing death is part of the disease. Facing bankruptcy is not. It is a societal cost, which those in no other developed country must pay.

Another year

I will have recently had my five year anniversary. So far, everything is looking good. Markers low, CT/MRI good. I'm working more. Life is more normal in that sense, too. In one way, I can put this disease behind me. But, the experience has permanently changed me and my family.

The experience of cancer, or any life threatening disease, changes how one approaches life. Time with family becomes more important. My children are teens and wanting to develop their own identities. I now know I will likely see them into adulthood. It now seems likely that I may even experience being a grandparent.

My cancer has also affected work. I was limited by my health during treatment by the disease, and now am being limited by the perception of others that I cannot work as much as before. I, too, have changed my perception. Being a workaholic makes less sense, since I feel relationships are far more important. But, now, having spent part of my retirement savings on my time off due to illness, I know I will need to keep working for several more years.

Cancer also affects my sense that I need to continue to have good insurance, as I know I am not invincible. As I see the ACA protections being taken down, I worry not only how this will affect my patients, but how it will affect me. I am still too young for Medicare, and that, too, seems in jeopardy. None of us will get out of this life without the clouds of illness or injury. Unless our society does not value its people, we need to think about this. We need to have a system to care for all of our people. I have seen far too many people whose lives are destroyed, not by the disease, but by the economic disaster that accompanies it.

Triage and the R-word

Recently, I retook Advanced Trauma Life Support. I had been an instructor in the past, but lapsed during my own medical treatment. But, now, back in the trenches, I needed to redo my certification. Since it is geared toward standardizing trauma care, the issue of mass casualties is addressed.  Even with a modern trauma center, a natural or man-made disaster could overwhelm the locally available resources. Traditionally, this was more of a problem for the military, and it was in that setting, during the Napoleonic wars, that the term "triage" originated.

Triage consists in dividing patients into three categories--those with unsalvageable injuries, who will die regardless of care; those for whom treatment will make the difference; and those with minor injuries who will survive regardless of care. Clearly, in the mass casualty setting, attention is directed toward the middle group, with minimal resources directed toward the other two. 

Modern healthcare has become so costly, that a society must decide how to allocate resources. Clearly, an extremely old and debilitated patient will not have a long survival with an aggressive cancer. So, perhaps care should be directed to palliation rather than attempt at cure. This might be kindest, as well as most cost effective.

Similarly, those with minor self-limited issues might be best treated with "watchful waiting" and reassurance. Again, what is best for society is also best for the patient.

The middle group is where the resources should be directed. These are the patients for whom more aggressive treatment will make a difference in outcome. Most infectious diseases have a low cost to benefit ratio, and their treatment is also beneficial for society. Cancer treatment is often costly, but is valuable to the patient and to society if there will be a reasonable length of survival with good quality of life. Recently, I reflected on the dozen or so of my friends who are back working full time after cancer treatment. For us, it was definitely worth it. But, I don't know if I would have wanted to go through it at age 90.

This sort of allocation is gradually becoming more accepted, as people are not wanting heroics as much near the end of life. But, still, nearly half of our health care expenditures are in the last month of life. If we, physicians, could do better at prognosticating which of the groups a patient would fall into, we would be better able to discuss potential outcomes, and guide patients and their families through end of life decisions. I am convinced that this lead to better outcomes for both the individual and society.

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. 

San Bernardino

The recent shooting in San Bernardino called on not only law enforcement, but also health care to do their best. I am proud of how we handled the crisis. Here are interviews with some of my colleagues: http://www.cnn.com/videos/tv/2015/12/03/san-bernardino-er-doctor-swat-sanjay-gupta-lead.cnn/video/playlists/san-bernardino-shooting/
And, another: https://www.youtube.com/watch?v=-y-ZMEF_m3A

Kunduz

While this is not directly related to my journey, it is about medicine.

Many years ago, after my fellowship, I looked into volunteering for Doctors Without Borders. It was as the war in Bosnia was heating up. I had no dependents at the time, and knew that, as a surgeon, the greatest demand might be in a war zone. I mentioned that I knew two Slavic languages. As it worked out, I did not end up as a volunteer. But, I have followed the activities of both MSF (Doctors Without Borders) and EMERGENCY, a similar group. So, it greatly disturbed me that a US airstrike had repeatedly hit a MSF hospital in Kunduz, Afghanistan (http://edition.cnn.com/2015/10/07/asia/doctors-without-borders-afghanistan-airstrike/index.html?eref=edition).

As a physician, I take seriously the responsibility of caring for all, even at some risk to myself. I have worked in inner city hospitals where I have been threatened by some gangs, but, excused that due to the drug induced impairment of those who threatened me. And, I have known that many would not have wanted to harm me, knowing that they might later need my services.

International law protects hospitals, both military and civilian, from deliberate attack. Physicians should provide impartial care, and thus, might provide care to both civilians and combatants. Like my experiences in the inner city, those who wage war are at risk of injury, and so they want hospitals and physicians who will care for them. That is why the events of last week are so disturbing. Despite the coordinates of the MSF hospital being provided, there were several bombing runs targeting the hospital reported. Hence, MSF is asking for an investigation of a possible war crime (http://www.motherjones.com/politics/2015/10/us-bombing-afghan-hospital-war-crime).

The US has bombed hospitals before (http://thinkprogress.org/world/2015/10/08/3710486/hospitals-bombed/), and is not alone in this (http://www.theguardian.com/global-development/2015/oct/05/kunduz-hospital-bombing-latest-long-line-attacks-msf-staff; http://www.bbc.com/news/world-asia-34444053). Civilians have increasingly become the victims of war during the last century.

I hope the truth about this event will come out. And, that a hospital can be rebuilt for the people of the region.

The R Word

Recently, I saw my oncologist for a follow-up. Mostly good news. I am coming up to an anniversary. It is becoming less and less likely that my cancer will recur. Lab tests are looking better. And he ordered the annual follow-up imaging, something that would require preauthorization. Since it's to be done a few months down the road, I began to think about when I should start calling the insurance company to explain why I needed this test. Should I wait for the denial or be pre-emptive? Each year I have been denied, then after I called and demanded to speak to the oncology reviewer, who then approved the test.
I am a physician. I know the lingo. I can talk to the oncology reviewer and explain my case. But, what of my patients? It's clear why they might slip through the cracks. If the clinic nurse doesn't "bird-dog" every study for utilization approval, call when needed, and involve the doctor when needed, studies and procedures may not get approved. The denial may slip past. The patient may return to clinic, unable to get the study, and not know why. It's unlikely for a patient to know where to start. And, even if they did, many of my patients don't know English, or not speak it well enough to address the denial themselves. They must rely on their doctors and nurses to intercede for them. Yes, that is part of the job, but on the day to day basis, it often seems there are more urgent problems to deal with.
Today, a colleague was venting about how hard it was to get things done, to get referrals or studies. We discussed the process for a patient with a herniated disc. He talked about how hard it was to get a specialist referral. Sometimes it could be months, he said. Our nurse chimed in to say that we usually schedule the patient within 2-3 weeks of receiving the referral. But, we want imaging done first. So, the patient has already had to jump through the pre-approval hoop twice. Once for the MRI (or sometimes CT), and once for the specialist consult. Maybe a third time for physical therapy. Each of these may take 2-3 weeks with someone "bird-dogging" the referral, longer without. And, then, after seeing the surgeon, maybe more physical therapy and possibly a pain clinic referral, with more pre-authorizations. Sometimes, each of these steps has to go back through the primary care provider. And, after that, if the patient doesn't improve with conservative care, yet another pre-approval process for surgery. So, it can be a slow process at times. The American version of waiting lines for surgery. For some surgeries, this may not be a bad idea, since many patients may recover on their own from some problems. Often they do with disc problems.
But, what of other problems? The answer is that it varies. Emergencies don't go through the pre-approval process, but rather retrospective review. While I was off due to my illness, and some since, I have done some of these reviews. For all, the key to approval is documentation. The provider must clearly document the reason for the test or procedure. This is good medical practice. Sometimes, as a reviewer, I have been able to infer why something is being done, but the documentation must be there, and it must fit in the boxes defined as approved by the insurance company. Sometimes, there isn't enough documentation, so there is simply a denial. Sometimes, the reviewer may need something clarified. Mostly, once the information is made available, the request makes sense. Sometimes, it doesn't. These are the tests and procedures that probably should be denied.
This process may take some time. Some patients get lost in all of this, and come back angry that "nobody cares." Their problem didn't get better, and may have gotten worse as they stumble through the system.
To me, this seems like the American version of the waiting lines for treatment in other countries. We wait at each step of the way. Sometimes, patients get frustrated and feel there is no way to navigate the system. And, so, the insurance company saves the money they otherwise would have had to spend. The American version of the "R word," rationing. It is a system of rationing that affects those who are least able to speak eloquently for themselves more than those who can. So, the most vulnerable may not get the care they need. And, so we see income disparities in length and quality of life, since income may serve as a marker for education and status. This seems why so many candidates for office don't want to address the issue of rationing, because they would need to admit that we already have rationing, that America has financial rationing of health care. And, it affects nearly all of us. Since, even with private or employer sponsored insurance, most of us have HMOs or PPOs, so our insurances have forced this upon us.

Vaccinations

Today, I was just in employee health for my annual PPD (skin test for tuberculosis) and I was reminded about flu vaccines. While I am a believer in vaccines (when was the last case of polio you saw?), I do not take the flu vaccine. I am allergic. But, I encourage others to take appropriate vaccines on schedule. I have vaccinated my children. I have vaccinated my pets. I have only stopped certain vaccines for myself due to my allergy.

I asked rhetorically in the last paragraph, "When was the last case of polio you have seen?" Years ago there were rooms of patients in iron lungs at hospitals like Rancho Las Amigos in Los Angeles County. Now the hospital is a rehab hospital. Iron lungs are a thing of the past. There are pictures from this time: http://www.polioassociation.org/Faces_of_Polio.pdf. I remember getting polio vaccination as a child. I knew someone who wasn't so fortunate. She had polio as a child. Her disease did not get to her respiratory muscles. But, she wore long leg braces and used crutches.

I remember when I had measles. I felt deathly ill. But, I was luckier than some. I survived. Roald Dahl's daughter died, as did many others. He wrote an essay about her death:  http://www.people.com/article/roald-dahl-vaccine-measles-letter-daughter-olivia-death. About two weeks after my bout of measles, the vaccine was released. Even as a child, I understood that children wouldn't suffer as I had. I was jealous. I was unhappy that I had suffered. And those who have suffered measles, especially when very young, may suffer another complication SSPE--subacute sclerosis panencephalitis. They then may suffer a progressive decline and death. (https://en.wikipedia.org/wiki/Subacute_sclerosing_panencephalitis)

Last year, there was another measles epidemic. It was small, compared to those of the past, but, it reminded us that the disease is not gone. That avoiding vaccinations carries risk. But, fortunately, for most of the anti-vaxxers, herd immunity has protected them. While they risk not only their own children, but others who have medical reasons to not be vaccinated.

These diseases are still around. Some of us must rely on herd immunity. As I do for flu vaccines.

Physician to Patient (and Back Again)

Just had another short piece published about my experiences as a patient: http://aansneurosurgeon.org/features/from-physician-to-patient-and-back-again/

I found it difficult to change roles from physician to patient, and now back to physician, or should I now admit, both. My experiences as a patient have certainly changed me. I hope it has helped to make me a better doctor. I also should apologize in advance for a few typos, caught too late.

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:
https://med.stanford.edu/news/all-news/2015/03/stanford-neurosurgeon-writer-paul-kalanithi-dies-at-37.html

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.