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.